Post Orgasmic Illness Syndrome (POIS)

  • 20068 Replies
  • 6527548 Views

0 Members and 1 Guest are viewing this topic.

*

Offline Karen W.

  • Moderator
  • Naked Science Forum GOD!
  • *****
  • 31660
  • "come fly with me"
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6350 on: 12/12/2009 02:26:42 »
YAYYYYYYYYYYYYYYYYYYYYY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Good JOB DEMO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Get well soon!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

"Life is not measured by the number of Breaths we take, but by the moments that take our breath away."

*

Offline martin88

  • Sr. Member
  • ****
  • 453
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6351 on: 12/12/2009 03:45:29 »
Hi All,
Demo is now out of surgery and is doing really well !
Good to hear!

Closest i have to your question. 
During two day high- am basically recovering by being super hyper. 
My tesosterone was aroung 613ng/dl
three days after after orgasm it is 292 ng/dl
Confucius,
This makes me wonder if I should wait more time before doing the test. Amazing change in your results!

Lyme D is very wide spread and it does mimmic alot of diffrent conditions , such as MS, Fibro,CFS, Depression, i know of many that have recieved diagnoses of MS later found out to have Lyme not MS, also CFS, LYME again, with me aswell i recieved the diagnose of  CFS,Depression, it turned out to be Lyme, Lyme is an epedemic in north america and around the world its the fastest growing disease and the largest more then aids and cancer, it is the most political aswell because of its long and very expensive antibiotic treatments some LYME suffers have been 10 yrs in treatments, so insurance companies are also involved in the political part of LYME and not being recognized as an epedemic, I am canadian and in Canada we have alot of Lyme cases that we know about more that we dont , but in the USA you guys are full of Lyme infected Ticks, whole familes have fallen ill to Lyme, many of whom are in my chat group, also they are now saying that Misquitos can also infect us with Lyme
Hi JJ, I have never been bitten by a tick but a lot by mosquitoes. I'm surprised mosquitoes can give lyme. I had a dog bitten by a tick... Also I'm wondering why the tests were negative for you. I tend to think there are many causes for POIS. (Ex. A lot of different diseases are causing fatigue.). So Lyme D can definitely be one of them.

*

Offline mellivora

  • Sr. Member
  • ****
  • 152
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6352 on: 12/12/2009 11:08:34 »
Demo,
Really happy to read you are doing well after the surgery. All the best in your recovery!

*

Offline John21

  • Hero Member
  • *****
  • 518
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6353 on: 12/12/2009 11:50:35 »
Good news, thanks Neil!

*

Offline Pablo445

  • Full Member
  • ***
  • 53
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6354 on: 12/12/2009 15:19:14 »
All the best to you Demo!

Looking forward to have you back here with your well balanced posts.

Thank you for all you support.

*

Offline Limejuice

  • Sr. Member
  • ****
  • 313
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6355 on: 12/12/2009 20:27:32 »
[8D]

http://img121.imageshack.us/img121/7784/pois.jpg

(not sure it's serious)

"It's rare but last year I've had 8 patients (5 women + 3 men) who came to me suffering from similar symptoms." says physician and researcher Donald Gibbs, of the Perth institute of Disease studies.

"they all came to me complaining of extreme fatigue, painfull eyes, swelling, sore throat, rashes and achy muscles."

What they had in common besides they flu-like symptoms stunned Gibbs,
"they all reported feeling like this almost immediately after experiencing orgasms. The symptoms last for as long as a week and the condition doesn't respond to any medications that I have found . Only time and abstinence seem to relieve their conditions."

Comments :

- This is the SAME analyse than M.Waldinger made.
- I need to know the list of meds he tried.
- When symptoms begin soon after orgasm, the symptoms are more powerful and long lasting, as we supposed.


Yes.  It's in our best interest to contact him, as well...let him know there are hundreds of us suffering from POIS.

*

Offline martin88

  • Sr. Member
  • ****
  • 453
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6356 on: 13/12/2009 00:32:14 »
B_Jim,
The article is from Weekly World News, september 17 2002, maybe helpful.
http://books.google.com.au/books?id=wPIDAAAAMBAJ&pg=PA43&lpg=PA43&dq=perth+institute+disease+studies&source=bl&ots=7_Bjc1rGez&sig=C8X-eC6Ep2Qj0NNm9PP6ebGxfGc&hl=fr&ei=4S8kS6C7EsnklAePnfTzCQ&sa=X&oi=book_result&ct=result&resnum=8&ved=0CC0Q6AEwBzgK#v=onepage&q=perth%20institute%20disease%20studies&f=true

I couldn't find this institute in the australian phone book...

In the POIS publication (Dr Waldinger paper) there is a small list of unsuccessful treatments:
Antihistamines,prednison. SSRI,benzo helped for the mental state but not for somatic symptoms.
« Last Edit: 13/12/2009 01:11:57 by martin88 »

*

Offline Pablo445

  • Full Member
  • ***
  • 53
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6357 on: 13/12/2009 01:59:05 »
B_Jim,
The article is from Weekly World News, september 17 2002, maybe helpful.
http://books.google.com.au/books?id=wPIDAAAAMBAJ&pg=PA43&lpg=PA43&dq=perth+institute+disease+studies&source=bl&ots=7_Bjc1rGez&sig=C8X-eC6Ep2Qj0NNm9PP6ebGxfGc&hl=fr&ei=4S8kS6C7EsnklAePnfTzCQ&sa=X&oi=book_result&ct=result&resnum=8&ved=0CC0Q6AEwBzgK#v=onepage&q=perth%20institute%20disease%20studies&f=true

I couldn't find this institute in the australian phone book...

In the POIS publication (Dr Waldinger paper) there is a small list of unsuccessful treatments:
Antihistamines,prednison. SSRI,benzo helped for the mental state but not for somatic symptoms.


Let's not forget this text seems to be from September 2002 and from Weekly World News (not exactly a Scientific Journal) ... and it is from a paper that also delivers articles such as  "Dead Sea scroll foresaw the internet", "woman sells hubby's organs in on-line auction", "cow poop tea - miracle cold medicine", "ghost hookers haunting sex shop", "aliens coming back home - to Earth!", "how to flash freeze your relatives for just pennies a day" (we could try that while someone discovers a cure), "Giant lobster attacks diver", "Robot ape terrorizes India" etc.   So if there is any validity at all in the "POIS" article it is probably not using the right name for the doctor or the right Institute. It is just another freak story in their "entertaining" but ridiculous paper...

*

Offline Finally

  • Full Member
  • ***
  • 73
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6358 on: 13/12/2009 03:59:13 »
I was bitten by a bug on the nose in 1976 and felt very ill almost immediately.  Not sure if it was a tick but it seemed too large to be a deer tick. Since I reacted to swat it away I never found the bug. I was not far  from East Lyme CT at the time. 
It was right after that the POIS symptoms appeared.

*

Offline martin88

  • Sr. Member
  • ****
  • 453
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6359 on: 13/12/2009 13:26:14 »
What do you think ? Has the Institute closed ? Is the article a fake ?
I agree with Pablo but it's so important that we must verify. Eventually the institute has an other name or it's a fake. In an other article they are writing about an "institute for paranormal studies in belgium" :) I couldn't find it but there is a center for unexplained phenomenon in belgium..

*

Offline Pablo445

  • Full Member
  • ***
  • 53
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6360 on: 13/12/2009 13:54:31 »
I was bitten by a bug on the nose in 1976 and felt very ill almost immediately.  Not sure if it was a tick but it seemed too large to be a deer tick. Since I reacted to swat it away I never found the bug. I was not far  from East Lyme CT at the time. 
It was right after that the POIS symptoms appeared.
Ticks are not the only vector for Lyme disease. All kinds of critters can be carriers: mosquitoes, spiders, etc. But then it does not mean the critter is carrying the bacteria. A bite does not equal Lyme disease. One has to be tested and present the clinical signs too. POIS could be considered a clinical sign and I believe it is worth being tested at least with the Igenex test and maybe even follow up with more tests afterward to confirm. If it is the case the therapy would be very focused: to get rid of Lyme disease - a daunting task by itself but at least a possible one.

*

Offline Pablo445

  • Full Member
  • ***
  • 53
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6361 on: 13/12/2009 14:02:35 »
Quote

Pablo445 : Thanks for your analyse. I know that's why I add not sure it's serious.  Why other medias didn't write something. Are you agree when I say it's the same analyse that waldinger made in 2002 ? 

Exactly - why do we read about this ONLY in this tabloid?  There is probably something true about it but it might be from a conversation someone had with a doctor and the rest was just invented - together with the "Robot ape terrorizes India" etc. For all we know it might have been someone who saw an article about the Waldinger paper and decided to thwart it enough to fit in the Weekly World New. Anyway I understand it could bring additional information but I would not waste too much time on this. If the doctor had claimed to find a cure it would be a different story and we could ask Crocodile Dundee for help.

*

Offline greg44

  • First timers
  • *
  • 6
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6362 on: 13/12/2009 14:20:14 »
Not sure if these symptoms related to POIS,
 
My skin is horrible i got so many pimples on face and top of shoulders. I noticed that every time when I poo that its like its covered with a layer of mucus that I have to wipe up, I can see layer of something like oil on surface of water, pretty nasty.
« Last Edit: 13/12/2009 14:26:04 by greg44 »

*

Offline Pablo445

  • Full Member
  • ***
  • 53
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6363 on: 13/12/2009 17:27:44 »
Wow! I just saw this thread has been viewed over 500,000 times!  No bad for a "rare" disorder.

*

Offline Pablo445

  • Full Member
  • ***
  • 53
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6364 on: 13/12/2009 17:37:45 »
This has probably been discussed before: http://www.issm.info/v4/data/issmlist/digest13.asp

Digest of recent discussions on ISSM mail (January - April 2006)

Hussein Ghanem MD

Discussion Digest

It is interesting that 3 of the last 6 clinical discussions on ISSM List involved post orgasmic headaches or cognitive symptoms. The proposed post-orgasmic illness syndrome (POIS) was brought up during the discussion.

*

Offline CertainlyPOIS

  • Hero Member
  • *****
  • 727
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6365 on: 13/12/2009 23:09:31 »
Quote from: CCconfucius on 10/12/2009 21:22:22
Closest i have to your question. 
During two day high- am basically recovering by being super hyper. 
My tesosterone was aroung 613ng/dl
three days after after orgasm it is 292 ng/dl

Confucius,
This makes me wonder if I should wait more time before doing the test. Amazing change in your results!

I think was high like that because of that that sevenday jump men experience if they have no sexual ecounters for a week. It is all tricky because both results are within range.

*

Offline CertainlyPOIS

  • Hero Member
  • *****
  • 727
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6366 on: 13/12/2009 23:11:50 »
CCconfucius when did you notice POIS started for you, was it during or after your bout with the measles? can you pinpoint a time when it started for you?

I hade measles around 7-10 between those ages not sure when. notice pois 17. But was absent minded since begining of high school ( always loosing my things). discovered masturbation in 8th grade.

*

Offline POIS-SUFFERER

  • Sr. Member
  • ****
  • 133
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6367 on: 14/12/2009 03:32:40 »
Not sure if these symptoms related to POIS,
 
My skin is horrible i got so many pimples on face and top of shoulders. I noticed that every time when I poo that its like its covered with a layer of mucus that I have to wipe up, I can see layer of something like oil on surface of water, pretty nasty.

Again I still have acne at 44, its a lot less than ever but still there, and yes oily face, and yes have a time noted the oily stool.

PS

*

Offline bright n clean

  • First timers
  • *
  • 3
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6368 on: 14/12/2009 04:12:04 »
i am a 55 year old woman who has had pois for over 10 years. I get severe joint pain and physical and mental fatigue the second day and it continues for a week or two. Eyesight gets blurry. Depressed.

According to some of my research in the field of ayurvedic medicine, the food we eat goes through transformations within our bodies.

"For both men and women, reproductive health depends on the health of the shukra dhatu, or reproductive tissue. In women the shukra tissue creates the ovum as part of the monthly cycle, and in men the semen is formed due to sexual stimulation. The shukra tissue itself is created as part of a long chain of metabolic transformations, starting with the digestion of food and including the transformation of food to nutrient fluid, that becomes blood, then blood becomes muscle, then fat, then bone, then bone marrow and finally, to shukra tissue.  Even if you don't want to conceive, there is a value in enhancing the shukra tissue. Shukra has a dual function, not only producing the sperm and ovum but also ojas, the finest product of digestion. Ojas creates vigor, bliss, lightness, stamina, immunity, luster in the skin, sparkle in the eyes, and clarity of mind. Ojas is vital to the health and happiness of everyone.
"Ojas: The Substance That Maintains Life. "People that can read auras will see that when the ojas is strong the aura is bright and shining. "
"Ojas is the subtle glue that cements the body, mind and spirit together, integrating them into a functioning individual."
"Ojas is the by-product of a healthy, efficient, contented physiology. It is the "juice" that remains after food has been properly digested and assimilated. When you are producing ojas, it means all your organs have integrated vitality and you are receiving the nourishment your mind and body need. Your whole being hums with good vibrations because you are producing and feeling bliss, not pain. However, when your agni isn't working properly, you don't produce ojas. Instead food, thoughts, and feelings turn into ama" or toxins which creates our feelings of malaise.

As i understand it, having 'oh' depletes ojas. Semen that is conserved nourishes the brain. Pois sufferers are more sensitive or less healthy than someone who has no symptoms, but we are not imagining things. The amino acids are helpful in improving digestion and releving pain. Vitamin D and  Vitamin B-12 are helpful. A search of ayurveda and ojas would be educational. Celibacy is very helpful. (try to fill a glass while emptying it.) [:I]


*

Offline Mr_Canadian

  • Jr. Member
  • **
  • 15
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6369 on: 14/12/2009 17:57:52 »
A question for everyone - for you, does the diarrhea aspect continue off and on throughout the duration of POIS, or is it only a few hours later and then non-recurring?

*

Offline sports_fan

  • First timers
  • *
  • 1
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6370 on: 15/12/2009 06:20:44 »
I've seen this thread in the past but haven't left a comment yet.  I been having POIS symptoms for 11 years i am 28 now.. after orgasm i can't think and process thoughts, when i talk words come very difficult to me, it feels like a TIA type symptoms.. severe fatique and social anxiety, memory loss, very diminished IQ.. this all lasts for 2-3days... i take zoloft and adderall but they are more effective when no orgasm for 1-2 days however they do help very little right after the orgasm.. My urologist is not aware of POIS and neither are 5 MD's,, i have been referred to sexual therapist but i feel like its a waste of time... all my blood tests came back normal... i am hoping that there will be a cure for this sumtime soon  [:D]
« Last Edit: 15/12/2009 06:24:07 by sports_fan »

*

Offline Ragnar

  • First timers
  • *
  • 1
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6371 on: 15/12/2009 18:12:31 »
First Post:
My POIS has gotten worse over the years: always head aches, depression, runny tummy back ache as several reported. Used to be only after orgasm but now it happens even after hot sex without orgasm...
A very good description of what happens with the neuro-chemistry and helpful tips to get around the syndrome is "Cupids Poisoned Arrow" by Marnia Robinson

*

Offline GoingCrazy

  • Hero Member
  • *****
  • 554
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6372 on: 15/12/2009 21:18:08 »
congrats demo on your success.

I'd just like to say that from last year my symptoms used to last 1-2 weeks.  Now I can say I have gotten it down to a solid 1-2 days than I am fine, I believe from celibacy, eating a bit "right", and exercise.  In my mind this might even be a symptom of depression, or even the cause of it.

*

Offline Limejuice

  • Sr. Member
  • ****
  • 313
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6373 on: 16/12/2009 05:20:11 »
B_Jim, do you know when that article was written?

I'm not able to find an abundant source of information about either the Dr. or the Institute, which is unusual for Dr.'s and institutes in general.  An explaination could be that the article is old. 

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6374 on: 16/12/2009 12:26:11 »
it has occurred to me that any correspondence i have sent out to local health organizations concerning POIS have probably been ignored due to the fact im sending them from a HOTMAIL or GMAIL account. is there any legitimate way to get a .EDU email address without having to pay for it?

http://www.cff.org/getinvolved/mailinglabels/

It's snail mail, but perhaps a way to get through on the most important stuff?
« Last Edit: 16/12/2009 12:49:12 by demografx »

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6375 on: 16/12/2009 12:35:10 »
THANKS EVERYBODY! I SURVIVED QUINTUPLE BYPASS WITH COMPLICATIONS!! I'M NOW LIKE A YOUNG AND ONLY PARTIALLY POIS-DAMAGED BUCK OF A HORSE. STILL IN ICU YOUR WELL-WISHING GIVES ME LOTS OF STRENGH. KEEP IN MIND THAT SHIPPING YOU FREE NURSIES REQUIRES COD POSTAGE NOT COVERED BY MEDICARE OR NHS!
« Last Edit: 16/12/2009 14:00:15 by demografx »

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6376 on: 16/12/2009 13:38:29 »


i have a question in regards to testoserone that my doctor asked me to post to all of you that could be of help on some information on this matter below and get back to her on it
-What happens to testosterone levels before, during and after ejaculation?

Thanks John

WELCOME, JOHN! I have been successfully T-treating POIS for one year now and the main thing my nonscientific mind tells me is that I feel a much more rapid re-generation of sperm. Not the question you asked, but hopefully just a tiny clue of added anecdotal data.
« Last Edit: 16/12/2009 13:46:48 by demografx »

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6377 on: 16/12/2009 16:52:21 »
FROM OUR NORD FRIENDS

Dear Demo,

I've given some thought to your question, and also discussed it with a colleague.

NORD does not know of researchers who have expressed interest in POIS, other than the two researchers from the Netherlands who wrote the article that you've cited--Drs. Waldinger and Schweitzer.

(As an FYI, NORD has awarded grants to a few researchers in the Netherlands--there are some outstanding researchers there.)

You might consider directly contacting Marcel Waldinger, MD, PhD, who is Director of the Outpatient Department of Neurosexology at Leyenburg Hospital in The Hague in The Netherlands, and is a neuropsychiatrist.  Perhaps he will know of other researchers to guide you to who want to do research, or perhaps he, himself, will be interested.

I believe that this is Dr. Waldinger's contact information:

Dr. M.D. Waldinger
Outpatient Clinic of Neurosexology
Leyenburg Hospital
Leyweg 275
2545 CH The Hague
The Netherlands
E-mail: dr.m.d.waldinger@gmail.com

NORD knows an American researcher/physician who has written a report for us on an entirely different male sexual/physiological disorder (Peyronie's diseases).  His name is Wayne Hellstrom, MD, and is a urologist from Tulane University.  Here is a link to his hospital page which contains his contact information.  If you wish, you can feel free to mention that NORD suggested that you contact him. http://urology.tulane.edu/faculty/hellstrom.html  Dr. Hellstrom might also be a good resource for you.

There is one issue that I want to make sure that you and your group are aware of, with respect to making donations to researchers, even to highly-reputable ones.  The issue is that, unless you have some type of formal contract, you will not know exactly how your money is being used, and might not ultimately find out the results. 

For example, NORD's program does not allow the funds to go to the the researcher's salary, overhead for running the lab (i.e. electricity costs), or other indirect costs. The money must go strictly for research expenses (chemicals, lab animals, lab assistant, etc). Also, the expenditures are very carefully accounted for--money does not get sent until a formal progress report is approved by our Medical Advisory Committee and a formal financial report is received.

I truly am not attempting to pressure your group to start a fund at NORD (although $4,000 is a very good starting point!). I just want you to know that there is some risk in donating funds without proper safeguards in place.

I hope this information is helpful to you, and most importantly, hope that you are successful in your quest for some solid research to be undertaken.

If I can answer any other questions for you, please don't hesitate to ask.

Best of luck to you all!




.
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
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 Wed, Nov 18, 2009 at 7:33 PM, <Certainly123@aol.com> wrote:
I sent an email to you recently concerning the disorder "post orgasmic illness syndrome" and I don't know if you received it. Would you please inform us briefly about the status, whatever the answer is, positive or negative. Thank you very much.
From: Certainly123@aol.com
To: rn@rarediseases.org
Sent: 11/11/2009 4:04:11 P.M. Pacific Standard Time
Subj: From your friends at the POIS Group!
 
Dear Stefanie,
 
We're having a rough time (bet you never heard THAT before!)
 
We've raised somewhere between $3,500 to $4,000, but we need to do something NOW. The frustration level of so many wasted lives is something I know you understand.
 
Raising money as per the case studies you sent is reassuring, but privacy is an important issue for us, because our disorder is based on....well, SEX! We're not in the Victorian era, but we aren't that enlightened yet as a society! So a neighborhood fundraiser barbecue asking our friends and neighbors for money to research our difficulties after orgasm....is not conceivable. And personally, I would feel reluctant to sit across from Oprah Winfrey and respond to the question, "Do you feel the same after masturbation as with sex?"
 
Rather than our going out and hiring doctors, labs, and/or a researcher ourselves, which is definitely a consideration on the table, would there be a possibility of your providing us with a starting point, perhaps a researcher who has expressed interest in studying something in our area? (sexual disorders, endocrine studies, etc.)
 
We could perhaps then "graduate" to a NORD commitment, with a small starting point and some successes (I, for example, have found 90%+ relief with my treatment! That was through the data and interchange of ideas at the forum)
 
I thank you once again for responding to us and being a friend of POIS Disorder!
 
Best regards,
 
"demografx"

In a message dated 7/17/2009 7:51:30 A.M. Pacific Standard Time, rn@rarediseases.org writes:

Dear Demo,


Thank you for contacting NORD.

We do not have information of post-orgasmic illness syndrome, nor could I find it listed as a rare disorder by our government's Office of Rare Diseases--ORD (http://rarediseases.info.nih.gov/RareDiseaseList.aspx?PageID=1).

It might be helpful to contact ORD, as perhaps they can offer some guidance.

Also, while this is a long shot, perhaps the following organization can shed some light on this condition:

The American Urological Association Foundation
E-mail: auafoundation@auafoundation.org
Website: http://www.auafoundation.org 

I wish you the best of luck!


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
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 Thu, Jul 16, 2009 at 9:54 PM, <Certainly123@aol.com> wrote:
 
We are writing to inform you about a serious new medical condition, and to ask for help; could you provide us with the name of an association or person who would have the resources to research this condition?
 
The first cases were officially described in 2002, by Dr. Marcel Waldinger (MD PhD) and endocrinologist Dr. David Schweitzer, MD.(http://www.ncbi.nlm.nih.gov/pubmed/11995603).  He referred to the condition as "Post Orgasmic Illness Syndrome" (POIS).
 
Essentially, those with POIS usually suffer debilitating symptoms that follow within minutes of orgasm, and last for days. The symptoms include extreme fatigue/exhaustion, word finding difficulty, anxiety, severe cognitive impairment, and irritability, but there are also other notable symptoms. Some with this condition have reported increased cortisol levels (e.g. over 200% of the upper reference for 24 hr urine cortisol).  Others have increased prolactin (over 400% of the upper reference), or decreased testosterone.  Pituitary abnormalities have been found in those who have had pituitary MRI scans.  One sufferer was found to have adrenocortical carcinoma.  Over 97% of the reported cases have been from men.
 
Quite alarmingly, the number of reported cases is increasing at a rapidly increasing rate.  Presently, about 300 cases can be found directly (or are linked) on a UK Science forum, "The Naked Scientists", which is administered by a Cambridge medic.  Other cases are being increasingly described by the ISSM (International Society for Sexual Medicine).
 
Please consider this carefully.  A helpful response could save many lives.  If you have any questions, or need more information, please ask.  Several prominent scientists with reputable university affiliations feel that this condition is in urgent need of research attention.
 
Best regards,
 

"demografx"
Moderator
POIS Forum
representing 300 POIS cases reported, and 300,000 + pages
POIS - The Naked Science Forum
 
 

« Last Edit: 16/12/2009 17:40:59 by demografx »

*

Offline John21

  • Hero Member
  • *****
  • 518
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6378 on: 16/12/2009 23:06:43 »
Demo,,
Great news! I am glad to hear you made out well, I'm sure it wasn't a pleasant experience, until it was over with that is. Nice to have you back.

I had an O event last Friday night, and I am glad to report that I have had no symptoms. My thoughts are that it might have something to do with my bodily magnesium being heightened, perhaps. I have been consuming two large spinach salads daily for over a week in an attempt to raise my magnesium naturally. I waited to report this to make sure I didn't have any Phase B backlash, but so far so good. Earlier that Friday night I had taken one half a DLPA 375mg and it messed with my head. It didn't feel like it helped me in any way so I don't think I will try it again. But I think loading up on spinach daily is a keeper.

*

Offline GoingCrazy

  • Hero Member
  • *****
  • 554
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6379 on: 17/12/2009 01:48:38 »
okay Defsync coming at you with another theory:

First Im basing this off of my experiences with Adderall and cigarettes, both which increase Norepinephrine in the brain. Both of these seem to give me an undesirable pseudo-POIS effect, hence why I dont do either.

So, orgasm increases blood plasma levels of norepinephrine (see link to article). What if POIS sufferers are those you already have WAY too much norepinephrine in them already, and something like an orgasm sends their body into severe overload, taking the body days to bring the levels back DOWN.

http://www.psychosomaticmedicine.org/cgi/content/full/61/3/290

Problem is finding a prescription that does nothing but lower epinephrine levels without zonking you out.



This is actually what I think it is.  Just a rediculous amount of adrenaline being released, or the possibility of us being super-sensitive to a release.  It says the levels of serotonin in the brain actually regulate adrenaline release, maybe that is why sleep helps.

*

Offline martin88

  • Sr. Member
  • ****
  • 453
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6380 on: 17/12/2009 02:56:00 »
THANKS EVERYBODY! I SURVIVED QUINTUPLE BYPASS WITH COMPLICATIONS!! I'M NOW LIKE A YOUNG AND ONLY PARTIALLY POIS-DAMAGED BUCK OF A HORSE. STILL IN ICU YOUR WELL-WISHING GIVES ME LOTS OF STRENGH. KEEP IN MIND THAT SHIPPING YOU FREE NURSIES REQUIRES COD POSTAGE NOT COVERED BY MEDICARE OR NHS!
Hope you're OK. You take this with humor as usual!!
I suppose you have some work to do now, take it easy :)

FROM OUR NORD FRIENDS
If you wish, you can feel free to mention that NORD suggested that you contact him. http://urology.tulane.edu/faculty/hellstrom.html  Dr. Hellstrom might also be a good resource for you.
This is encouraging, thanks for posting!

*

Offline Limejuice

  • Sr. Member
  • ****
  • 313
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6381 on: 17/12/2009 04:09:00 »
Welcome back.  A week felt like a month without any Demo posts or PM's.

Were all glad you pulled through!

*

Offline Limejuice

  • Sr. Member
  • ****
  • 313
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6382 on: 17/12/2009 04:17:05 »
Demo,,
I had an O event last Friday night, and I am glad to report that I have had no symptoms. My thoughts are that it might have something to do with my bodily magnesium being heightened, perhaps. I have been consuming two large spinach salads daily for over a week in an attempt to raise my magnesium naturally. I waited to report this to make sure I didn't have any Phase B backlash, but so far so good. Earlier that Friday night I had taken one half a DLPA 375mg and it messed with my head. It didn't feel like it helped me in any way so I don't think I will try it again. But I think loading up on spinach daily is a keeper.

This is encouraging.  Do you eat raw or canned spinach?

*

Offline CertainlyPOIS

  • Hero Member
  • *****
  • 727
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6383 on: 17/12/2009 04:47:57 »
Welcome back demografx, congratulations on your success. 

*

Offline John21

  • Hero Member
  • *****
  • 518
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6384 on: 17/12/2009 11:07:44 »
LJ,

Quote
This is encouraging.  Do you eat raw or canned spinach?

Mainly raw baby spinach.  I have been cooking some though, I have read that some nutrients are absorbed much better after cooking, such as iron.

The magnesium idea is kind of a wild guess, but it is strange that everything nutritionally that has seemed to help me has been high in magnesium. Note that more magnesium means more testosterone. Maybe some people need a higher Mg/Ca ratio, or something.

*

Offline Pablo445

  • Full Member
  • ***
  • 53
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6385 on: 17/12/2009 13:52:36 »
A little note about Lyme disease (I will be tested for it in early January)

From Wikipedia:

A developing hypothesis is that the chronic secretion of stress hormones as a result of Borrelia infection may reduce the effect of neurotransmitters, or other receptors in the brain by cell-mediated pro-inflammatory pathways, thereby leading to the dysregulation of neurohormones, specifically glucocorticoids and catecholamines, the major stress hormones.[69][70] This process is mediated via the hypothalamic-pituitary-adrenal axis. Additionally tryptophan, a precursor to serotonin appears to be reduced within the central nervous system (CNS) in a number of infectious diseases that affect the brain, including Lyme.[71]

*

Offline martin88

  • Sr. Member
  • ****
  • 453
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6386 on: 17/12/2009 14:35:04 »
LJ,

Quote
This is encouraging.  Do you eat raw or canned spinach?

Mainly raw baby spinach.  I have been cooking some though, I have read that some nutrients are absorbed much better after cooking, such as iron.

The magnesium idea is kind of a wild guess, but it is strange that everything nutritionally that has seemed to help me has been high in magnesium. Note that more magnesium means more testosterone. Maybe some people need a higher Mg/Ca ratio, or something.
the magnesium deficiency can eventually come from the potassic fertilizers in vegetables, so the magnesium effect is supposed to be enhanced with organic vegetables.

Recently I noticed an improvement of POIS with a multivitamin supplement. I don't have this effect with all multivitamins supplements. I realized the efficient one was containing vitamin K, but of course it can be linked with something else. Spinach are rich in vitamin K. (and magnesium,folic acid,vitamin A,oxalic acid,...).


Vitamin K deficiency reduces testosterone production in the testis :
Link (Not sure if the vitamin K in vegetables has the same effect)

Vit K is also involved in calcium metabolism (and perhaps magnesium, it was mentionned in an other forum)

Taking probiotics helps the body to produce vitamin K
« Last Edit: 17/12/2009 15:23:11 by martin88 »

*

Offline martin88

  • Sr. Member
  • ****
  • 453
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6387 on: 17/12/2009 14:50:44 »
A little note about Lyme disease (I will be tested for it in early January)

From Wikipedia:

A developing hypothesis is that the chronic secretion of stress hormones as a result of Borrelia infection may reduce the effect of neurotransmitters, or other receptors in the brain by cell-mediated pro-inflammatory pathways, thereby leading to the dysregulation of neurohormones, specifically glucocorticoids and catecholamines, the major stress hormones.[69][70] This process is mediated via the hypothalamic-pituitary-adrenal axis. Additionally tryptophan, a precursor to serotonin appears to be reduced within the central nervous system (CNS) in a number of infectious diseases that affect the brain, including Lyme.[71]
Interesting Pablo, let us know the results.
About Lyme someone in a forum was suggesting to take Droxidopa (NE replenishing properties)
http://www.canlyme.com/forum/viewtopic.php?t=6076&view=next&sid=3b1d5f15dc93a95998b351b8f8043abb

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6388 on: 18/12/2009 07:03:23 »
Demo,,
I had an O event last Friday night, and I am glad to report that I have had no symptoms. My thoughts are that it might have something to do with my bodily magnesium being heightened, perhaps. I have been consuming two large spinach salads daily for over a week in an attempt to raise my magnesium naturally. I waited to report this to make sure I didn't have any Phase B backlash, but so far so good. Earlier that Friday night I had taken one half a DLPA 375mg and it messed with my head. It didn't feel like it helped me in any way so I don't think I will try it again. But I think loading up on spinach daily is a keeper.


 

This is encouraging.  Do you eat raw or canned spinach?


Limejuice, I find John's thinking WAY encouraging!!

Popeye's postspinachcanguzzling pic above clearly shows superspermiotic strength, hardly to offer ANY postorgasmic sluggishness or brain fog in the light of a most certainly ravishing encounter with the Lovingly Gorgeous Ms. Olive Oyl!!

My money's on John 
« Last Edit: 18/12/2009 07:30:24 by demografx »

*

Offline John21

  • Hero Member
  • *****
  • 518
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6389 on: 18/12/2009 10:43:37 »
Demo,
Oh, so that's what's up with Popeye.... his exuberant gun show demonstrates his his lack of POIS symptoms from his recent encounter with lady Oyl!   [;D]
« Last Edit: 18/12/2009 10:50:11 by John21 »

*

Offline EDS

  • Jr. Member
  • **
  • 36
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6390 on: 18/12/2009 15:08:01 »
Welcome Back, Demo! Glad things went well with the surgery!!  [:D]

*

Offline John21

  • Hero Member
  • *****
  • 518
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6391 on: 19/12/2009 00:33:53 »
I recently reported that this time I had no "Phase B" (a burn out that I sometimes felt about a week after ejaculation), but the last couple days I was somewhat exhausted. I'm not sure that it was actually a backlash from ejaculation, or something else, but I thought I'd mention it to be thorough.  [:-\]

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6392 on: 19/12/2009 05:14:03 »



 
This fabulous POIS thread has now exceeded a
cool half-million page views!

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6393 on: 19/12/2009 05:43:09 »

Welcome back Demo !

Once again, thank you very much for all the job you made. All the contacts, all mails sent give a real credibility to our forum.


And thank YOU, B_Jim! Without all your fantastic support and RESEARCH here, we wouldn't really have an interesting POIS story to tell the world! And MANY Thanks for being such a LOYAL longterm supporter, from the very beginning of our foundation!
« Last Edit: 19/12/2009 13:41:01 by demografx »

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6394 on: 19/12/2009 13:35:08 »
Demo's new  POIS finding from heart surgery?

Aldosteronism overactivity of my adrenal gland makes too much aldosterone which signals my body to  make little potassium.  

So I'm now on spironalactone med that is an Aldosterone Antagonist.

We'll see soon if it bumps my cure for POIS!!

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6395 on: 19/12/2009 15:06:32 »
Will our very own John21, Popeye , and Ms Olive Oyl collaborate to form JPO-international POIS Conglomerate??? Film at 11:00 !




Eating spinach really can give you Popeye's strength
                                     UK Mail, December 19, 2009


Spinach really does make you strong like popeye, scientists say

Parents have long told reluctant children that eating their spinach will make them strong like Popeye. Now scientists have proved them right.
The cartoon hero always had a can of spinach handy every time he needed a quick boost to his biceps to defeat the villainous Bluto and win over Olive Oyl.
Researchers have just discovered a steroid chemical in leafy greens which ramps up the manufacture of muscle protein.
US scientists at Rutgers University in New Jersey extracted the compounds, known as phytoecdysteroids, from spinach.
"When they placed the liquid extract on samples of cultured human muscle, it sped up growth by 20 per cent," the New Scientist reported.
Rats became slightly stronger after a month of injections of the extract, the study found.
But before you rush out to stock up on the leafy green, be warned you will need a wheelbarrow full to see a substantial effect.
"Unfortunately, you would need to eat more than a kilogram of spinach every day to gain equivalent amounts of the steroid," the report concluded.
Spinach was chosen as Popeye’s strength enhancer in 1932 because it was packed  with nutrients.
The findings were published in the Journal of Agricultural and Food Chemistry.
 
« Last Edit: 19/12/2009 15:26:28 by demografx »

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6396 on: 19/12/2009 16:04:45 »

Welcome Back, Demo! Glad things went well with the surgery!!  [:D]


Thanks, EDS!!

Yesterday was Scary Complication #2. I was defbrillated with electric shock zaps to my chest, just like those in TV ER shows! WENT FINE!

I much prefer writing POIS posts and emails!

All the encouragent here in this shocking ordeal (I thought I had indigestion, not a massive blockage of 5 heart arteries requiring open heart surgery!) has been WONDERFUL. Thank you so much!!!

Suggestion to all: get an angiogram, the only way to determine for you. It's very simple. Controlling high BP, cholesterol, with meds is NOT good enough!  Plaque obstruction builds "silently and painlessly, but then one day........don't be like me and wait happily to the end. I now feel exhausted-but-on-my-way- to-brand-new-exciting-life!!!!!!

I'm so glad you've all become part of my new life.
« Last Edit: 19/12/2009 16:19:08 by demografx »

*

Offline martin88

  • Sr. Member
  • ****
  • 453
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6397 on: 19/12/2009 17:57:48 »

Welcome Back, Demo! Glad things went well with the surgery!!  [:D]


Thanks, EDS!!

Yesterday was Scary Complication #2. I was defbrillated with electric shock zaps to my chest, just like those in TV ER shows! WENT FINE!

I much prefer writing POIS posts and emails!

All the encouragent here in this shocking ordeal (I thought I had indigestion, not a massive blockage of 5 heart arteries requiring open heart surgery!) has been WONDERFUL. Thank you so much!!!

Suggestion to all: get an angiogram, the only way to determine for you. It's very simple. Controlling high BP, cholesterol, with meds is NOT good enough!  Plaque obstruction builds "silently and painlessly, but then one day........don't be like me and wait happily to the end. I now feel exhausted-but-on-my-way- to-brand-new-exciting-life!!!!!!

I'm so glad you've all become part of my new life.

Thanks a lot Demo to share this very useful advice! The problem you have now had been in my close family too (ten years ago and before), and everything is still well.


Demo's new  POIS finding from heart surgery?

Aldosteronism overactivity of my adrenal gland makes too much aldosterone which signals my body to  make little potassium.  

So I'm now on spironalactone med that is an Aldosterone Antagonist.

We'll see soon if it bumps my cure for POIS!!
I'll get tested for this. We talked in the forum several times about things linked with aldosterone in the past.
« Last Edit: 20/12/2009 13:51:09 by martin88 »

*

Offline martin88

  • Sr. Member
  • ****
  • 453
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6398 on: 19/12/2009 19:12:57 »
Did someone try cordyceps for POIS? It's supposedly useful for sexual function, immune system and opium addiction.
http://www.webmd.com/vitamins-supplements/ingredientmono-602-CORDYCEPS.aspx?activeIngredientId=602&activeIngredientName=CORDYCEPS&source=3
« Last Edit: 19/12/2009 19:16:59 by martin88 »

*

Offline Pablo445

  • Full Member
  • ***
  • 53
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6399 on: 19/12/2009 21:36:22 »
Increasing testosterone naturally
------
J Appl Physiol. 1997 Jan;82(1):49-54.
Testosterone and cortisol in relationship to dietary nutrients and resistance exercise.

Significant correlations were observed between preexercise Testosterone and percent energy protein (r = -0.71), percent energy fat (r = 0.72), saturated fatty acids (g.1,000 kcal-1.day-1; r = 0.77), monounsaturated fatty acids (g.1,000 kcal-1.day-1; r = 0.79, the polyunsaturated fat-to-saturated fat ratio (r = -0.63), and the protein-to-carbohydrate ratio (r = -0.59).
------
Basically it shows apositive correlation between saturated and monounsaturated fat and testosterone levels, and a negative correlation between polyunsaturated fat and testosterone. Food very high in monounsaturated fat:  hazelnuts, macadamias,  olives, and avocados. Olive oil of course.

I have not read the whole study but it also  shows a negative correlation with Protein and polyunsaturated fat (almost all vegetable oils except Olive and coconut).
Just something to think about...