[Vandemolen3]

I read two things about hyposensitization therapy on the Dutch Wikipedia:

'Research is being conducted to injections of the allergen directly into the lymph nodes. 3 injections would prove as effective as normal injection cycle of 3-5 years (54 injections), while the number and severity of adverse events would be less. This is still in the experimental phase.'

English article:
http://www.pnas.org/content/105/46/17908.full.pdf+html

And this:
Many allergists feel that allergy desensitization little more sense, because other than allergies may come to the fore.

I have other allergy's:
1. Perfume allergy
2. Allergy for cigarettes
3. Allergy for dust
4. Allergy blossom tree
5. Allergy for some fruits like peaches

[Habibou]

Very interesting !
So we have to focus on "intralymphatic allergen administration enhanced"
This method reduce the treatment from 3 years to 8 weeks !
I wonder how it is possible but i would take it anyways []
Do you think we can have more information about it?

[Counterpoints]

First, congrats to Dr. Waldinger and his team!  This is a really big step!


I agree with what Counterpoints said, though:

I really don't like that this is how the news is reporting the symptoms:
"People with the condition, known as post orgasmic illness syndrome or POIS and documented in medical journals since 2002, get flu-like symptoms such as feverishness, runny nose, extreme fatigue and burning eyes immediately after they ejaculate. Symptoms can last for up to week."

People from our forum will show their physicians this description and will get "but you don't have this".  The whole cognitive aspect of POIS, which affects at least a third of us exclusively -- without physical symptoms -- is being ignored.  Indeed the first poster in this thread, the one who started the whole POIS thread (John21) had exclusively cognitive symptoms.

I think the Wikipedia description is a lot more accurate.

I was also confused as to why Dr. Waldinger (or at least the reports) focus only only the physical, rather than the cognitive and the emotional.  However (and this is only a hopeful guess), it may be that Dr. Waldinger specifically and strategically framed his description in purely physical ("flu-like") terms, in order to prevent people from interpreting the syndrome psychologically.  That is, if had had also emphasized cognitive and emotional aspects, it might have been easier for people to dismiss it by "It's all in their heads!"  With this description, it might be more readily accepted and acknowledged, which will help a lot in the long run.  However, it would be nice if, in future reports, the cognitive/emotional side gets mentioned as well.

Also, the fact of framing as an allergic reaction can be helpful in expanding it to cognitive realms (and convincing physicians)--if you do a google search for the combination of 'brain fog' and 'allergies' you get a lot of hits. 

I agree.  I can see how if the cognitive aspects are described carelessly that they could be misperceived.  However, simply adding a small phrase like 'others exclusively suffer from aphasia and cognitive dysfunction [following orgasm]' would not add a negative bias, and would be more scientifically accurate.  Otherwise the description is not fair and people who have this condition will be denied help.

I haven't seen the two scientific articles yet.  It will be really interesting to read them.  Overall this is great news.  I hope now other people will start seriously researching POIS too.

[daveman]

I know that many have had vasectomy reversal without problems. I had mine after 22 yrs. and my doc said that I will have produce sperm antibodies. That is, my sperm wouldn't have much chance once released to the system. He said that also, the battle would probably leave the duct damaged before too long.

He hadn't mentioned the systemic repercutions, and being that he mentioned every possibility he could think of to protect himself, I think that he just didn't know that it would have a systemic reach.

1) I had a reversal after many, many years, which most don't, and 2) vasectomy reversal hasn't been around long enough to have extensive related feedback.

Is vasectomy not an option to get rid of POIS? Maybe for the older patients?

I'm not sure but I think the question was asked once and there are more than one with vasectomies AND POIS if I'm not mistaken.... don't remember how old they may have been!

[nick2k22]

Does any one have the new papers?

I emailed Dr Waldinger but recieved no response.  I know he's a busy man.

I was just wondering if anyone could send me a copy of the pdfs?

Thanks,
Nick

[GoingCrazy]

Maybe drinking our own semen was a good idea... haha. I really hope this is the case for all of us.  But I still am confused on how a person can develop this over a period of time, and why symptoms, such as mine, only appear mentally, e.g. I don't get any bodily reactions, no flare ups, sores of anything.  Is there semen flowing through my brain when this happens?  I don't mean to appear as a skeptic or anything it just seems very confusing.

I do agree how those the brain get connected to all these, i understand the flu reaction but not the fatigue and brain symptoms. 
And how does girlwind figure into all of these women dont make sperm.

That's a good point.

[horizon]

Ok --COCKY SMUG MODE ON---
thank you, thank you everyone
Where's my prize then?...for figuring out a treatment out 3 months back!!
thank you, thank you

Just kidding!!  [] []

but heres afew of many questions
WEEKLY INJECTIONS FOR 2 YEARS? CANT BE GOOD FOR YOUR VEINS/ARMS??
CAN IT COME IN PILL FORM?!
DOES IT NEED CONSTANT FRESH WEEKLY SEMINAL FLUID (please no!)?? ONE JUST JUST ONE "DEPOSIT" AT THE START? CAN LOCAL DOCTORS DO THE INJECTIONS (IF THE SERUM IS POSTED)?
CAN WALDINGER TELL THE 2 IN THE STUDY TO JOIN THE FORUM PLS OR ANY OF THE 45?

Dr.Bernstein & Dr.Resnick in cinnicinati & new york will want hear about POIS now!!!

http://health.discovery.com/videos/sexual-health-allergic-to-semen.html
http://www.livescience.com/health/061113_women_allergy.html

these are interesting!!
http://health.discovery.com/videos/sexual-health-allergic-to-semen.html
http://health.discovery.com/videos/sexual-health-anatomy-of-arousal.html

anyone live in cinnicinati?

http://www.livescience.com/health/061113_women_allergy.html
http://www.ucomparehealthcare.com/drs/new_york/R21.html

Dr. David Resnick
Allergy / Immunology
3959 Broadway
New York Presbyterian Hospital
New York, NY

Ive just got a feeling some kind of diluted prolactin solution (or whatever he suggests) could cure POIS over time. He maybe able to figure out if we are allergic to one or all of the sexual arousal hormones.

Any New Yorkers here?

How about this as an experimental POIS treatment?
- Diluted injections of either or/and
Nitric Oxide, ??
Norepinephrine, Serotonin, Oxytocin, Vasopressin, Prolactin and Melatonin ??
- Diluted semen ??

 but rather than as a treatment, perhaps we could consider something similar to what the alergists do....  that is expose one's self to diluted versions of suspected antagonists in a controlled maner to see if there's something in particular that we react to. Once (if)identified, we could imagine that the solution would be one step closer.

no, we expose ourselves to diluted versions of suspected antagonists in a controlled manner to "desensitize" ourselves so we wont react in the future to the current antagonists..

a POIS cure.

like the way hayfever jabs work
like in the video, which showed a woman allergic to her husbands semen, they made a serum from his semen to immunize her (they took a blood test to work out what proteins she is allergic to), so that she no longer reacts to the semen.

Sure we need a good doctor like Bernstein or Resnick to find out what proteins or hormones we need "immunizing" from.
(If it works natural Free testosterone levels in the body may raise?)

I agree we should wait for Dr.Waldingers reports before proceeding this line but its the idea that excites me the most since joining the forum.

Horizon, with the million-and-one POIS-treatment possibilities that you've seen here, I'm really glad to see your excitement over one in particular.

[Vandemolen3]

Very interesting !
So we have to focus on "intralymphatic allergen administration enhanced"
This method reduce the treatment from 3 years to 8 weeks !
I wonder how it is possible but i would take it anyways []
Do you think we can have more information about it?

From a Dutch newspaper site:

http://translate.googleusercontent.com/translate_c?hl=nl&ie=UTF-8&sl=nl&tl=en&u=http://vorige.nrc.nl/wetenschap/article2056772.ece/Hooikoorts_te_genezen_met_drie_prikken&rurl=translate.google.nl&twu=1&usg=ALkJrhhsygNTouvRhBZkdfDBa9VTuWMIyw

The last line:
Probably injections via the lymph nodes also effective against several other allergies.

Maybe there are more articles in English and in your case French. Just search on Google with the words:
'hyposensitization therapy lymph nods'

[Vandemolen3]

Haha Horizon, it was a woman on this forum who came the first with the semen allergy. I can't find the post anymore. I and others kicked in and found it a possible theory. So no prize for you!

[demografx]

Having started the thread at the beginning, I'm just now seeing this major update, I have to say, it didn't put a smile on my face. Allergic to one's own semen treated by years of injecting semen into your skin??

I feel like slamming my head against a wall until it splits open and my brain drips out.

Before you do that, ANONNY, please consider this:

I think there is much greater hope now. And that doesn't necessarily mean 5 years of waiting. My last 2 years - because of this forum - have been a dramatic, wonderful improvement in my 30-year POIS agony history.

Now, I look forward to even more improvement, and with further research by Prof. dr. Waldinger.

And our road is now paved more smoothly with serious scientific medical papers that we can confidently wave in the faces of all those silly naysayers who say, "it's all in your heads" !

ANONNY, welcome to the POIS thread of The Naked Science Forum!



Here are some POIS resources which may be helpful to you:


Our POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/

Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video:

Our new POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
http://forums.delphiforums.com/POIS/chat

First POIS Research Study, 2002

We have a copy of the first formal medical investigation on POIS by Prof. dr. Marcel D. Waldinger,MD,PhD, and Dr. Dave Schweitzer, MD.

  
Recent POIS Research Study, 2010

CASE REPORT
Postorgasm Illness Syndrome - A Spectrum of Illnesses
Jane Ashby, MRCP, and David Goldmeier, MRCP
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg316781#msg316781


British Medical Journal Case Report, 2010

Case study by Dr. Selwyn Dexter of a patient with a headache-featured POIS symptom treated with progesterone/norethisterone.
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1


There are a couple of ways to get any or all of the above 3 studies: (1) if you want a PDF copy, send me a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and I'll send you back the PDF.

Or, if you prefer, (2) I can simply reply with a Private Message (no regular email needed) and provide you with a simple text version embedded in your PM.

To send a Private Message, click on "Messages" at the top of this page. At the Messages page, click on "New Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.

Remember to put a quote around my name, i.e., "demografx".


New York Times article,

January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

In addition to serving our own informational interests, the resources listed above can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN OUR HEADS'! "

Also, it can be helpful when dealing with medical professionals to point out the successful existence of our rapidly growing forum, which has already been referenced in respectable sources such as the British Medical Journal and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For over 3 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus nearly 1,000,000 page visits. Not bad for a rare malady!

[Vandemolen3]

but heres afew of many questions
WEEKLY INJECTIONS FOR 2 YEARS? CANT BE GOOD FOR YOUR VEINS/ARMS??
DOES IT NEED CONSTANT FRESH WEEKLY SEMINAL FLUID?? ONE JUST JUST ON LOAD AT THE START? CAN LOCAL DOCTORS DO THE INJECTIONS (IF THE SERUM IS POSTED)?
CAN WALDINGER TELL THE 2 IN THE STUDY TO JOIN THE FORUM PLS OR ANY OF THE 45?

I think it's frozen semen. They only need a bit and it will be diluted. There are people who I know who have these injections too for other allergy's. They don't seem to have a problem. In most cases of hyposensitization therapy in the beginning you have to take an injection every week. And after a few months it's once a month. I don't know if this is the case in the semen injections. I hope so.
But you have two arms. An injection for one arm once in two weeks.

[gabin]

As is commonly known, autoimmune diseases like asthma, arthritis and so on are inherited.
So one who has genetic predisposition for them is more likely to get it. My mum has asthma and I had early signs of it at puberty. So seems like I must be prone to autoimmune diseases.
I'm just reflecting (talking aloud) now, but I didn't have any sort of allergy (or just didn't face an allergen) before POIS started, but I found myself allergic to cats 2 years ago (or 3 years since POIS started), which I for sure wasn't before POIS...
Does anyone here have close or distant relatives with autoimmune diseases?

[GoingCrazy]

Again, Thank you Dr. Waldinger for all your efforts,

But I still have many questions, such as female POIS, and I don't know, but it seems a little un-surprising that semen injections into your own skin will cause a reaction.  As Counterpoints I believe pointed out and I have read just a moment ago, that "POIS is characterized by sneazing, runny nose, burning eyes...",  I would do anything to trade for those symptoms.  I believe our main POIS is mental.  If it were an auto-immune reaction, shouldn't we be sneezing and having a runny nose?  I currently have none of that and it is all mental for me.

Also, if it were an auto-immune reaction, why do taking naps, testosterone injections, yawning, "calcium magnesium", rhodiola rosea, and all of these little tidbits of practices work?

I went out and picked up some Benadryl (regular) which is an antihistamine commonly used for treating allergic reactions.  I dont have much going on today, so I'm gonna take some and watch what happens...  (last night I ejaculated, symptoms are present)

I was surprised to hear the "allergy theory". I have had allergic reactions to things, and they are totally unlike POIS symptoms. From my understanding, an allergy is caused by something like an irritant that the body is trying to reject through things like swelling, itching, sneezing, redness, etc.  
Are there any other instances of allergies which cause the same core symptoms as POIS? Ie. severe exhaustion, fatigue, social withdrawal, nervous system stress, etc.

I ask the same thing

[demografx]

ANONNY, this post will help you find information about POIS that we have already discussed, by tailoring a Google search to this forum:


SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: 3 years' worth of posts (over  10,000 posts!) from 150+ Forum members, and an additional 150 POIS sufferers found elsewhere on the Internet by Member B_Jim.

In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/

for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/

and 740 results came up for "nocturnal emission" within the Forum.

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.

[Counterpoints]

I was surprised to hear the "allergy theory". I have had allergic reactions to things, and they are totally unlike POIS symptoms. From my understanding, an allergy is caused by something like an irritant that the body is trying to reject through things like swelling, itching, sneezing, redness, etc.  
Are there any other instances of allergies which cause the same core symptoms as POIS? Ie. severe exhaustion, fatigue, social withdrawal, nervous system stress, etc.

Autoimmune conditions sometimes have these symptoms.  e.g. lupus:
"Common initial and chronic complaints include fever, malaise, joint pains, myalgias, fatigue, and temporary loss of cognitive abilities."

As far as women and POIS... about 99+% of cases we see here are men.  It makes sense that the first explanations would mostly apply to men.  It's possible for the rare female cases to have some variant (e.g. an autoimmune reaction to something else they release during orgasm).

[gabin]

As Counterpoints I believe pointed out and I have read just a moment ago, that "POIS is characterized by sneazing, runny nose, burning eyes...",  I would do anything to trade for those symptoms.  I believe our main POIS is mental.  If it were an auto-immune reaction, shouldn't we be sneezing and having a runny nose? 

Because you're talking about cases when allergen gets into body via respiratory channels (like pollen, dust, perfume), and sneezing, runny nose and burning eyes are all consequent symptoms of rejection by respiratory system.

[Vandemolen3]

As is commonly known, autoimmune diseases like asthma, arthritis and so on are inherited.
So one who has genetic predisposition for them is more likely to get it. My mum has asthma and I had early signs of it at puberty. So seems like I must be prone to autoimmune diseases.
I'm just reflecting (talking aloud) now, but I didn't have any sort of allergy (or just didn't face an allergen) before POIS started, but I found myself allergic to cats 2 years ago (or 3 years since POIS started), which I for sure wasn't before POIS...
Does anyone here has close or distant relatives with autoimmune diseases?

Yes I have relative with autoimmune diseases. 3 brothers have Crohn's disease. I thought I had Crohn too. But it was POIS (and IBS).
And a cousin has astma.

[horizon]

One study from the University of Cincinnati of 1,073 women who sought information on semen allergy concerning their symptoms found 130 had the allergy.

this maybe the same with POIS, there may be some POIS sufferers semen allergy doesnt apply to.

- 88% of POIS sufferers had semen reaction- 29 of the 33 in Waldingers study.

[demografx]

Hi everyone

I'm back after a long time out of the forum. I had just lost hope.
Today is a great day, knowing there is a team working on POIS. I feel the same joy as the first time I visited this forum years ago. Let's hope everything works out well for us all.

Greetings from Chile, Juan Pablo Lewin.

JP

JP, welcome back! Long time no see!

[horizon]

When can we read the articles?