[Pablo445]

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.

[Pablo445]

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.

[greg44]

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.

[Pablo445]

Wow! I just saw this thread has been viewed over 500,000 times!  No bad for a "rare" disorder.

[Pablo445]

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.

[CertainlyPOIS]

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.

[CertainlyPOIS]

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.

[POIS-SUFFERER]

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

[bright n clean]

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]

[Mr_Canadian]

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?

[sports_fan]

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  []

[Ragnar]

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

[GoingCrazy]

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.

[Limejuice]

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. 

[demografx]

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?

[demografx]

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!

[demografx]

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.

[demografx]

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
 
 

[John21 (OP)]

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.

[GoingCrazy]

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.