[eur79m]

I am fed up with the medical system!

I have a valid theory what causes my particular symptoms and have proposed reasonable diagnostic procedures to test the validity of my theory.

Still, each and every doc at my local university hospital is trying to get rid of me by suggesting psychological remedies to obviously physical causes. Everything I present, facts, cause - effect relationships, correlations, references to everything you have collected in this forum so far, is generously waved away and ignored. Everybody I have met so far is too afraid to try anything new that might cause negative side effects or can be seen as a major intervention, even if I declare to bear any related costs and waving any doc/hospital liabilities. In the medical system my right to self-determination is taken away and I declared incompetent at the whim of the gods in white...

Lets start at the beginning... as I described in previous posts, my case is slightly different from the majority of the cases I read about so far, in that my POIS symptoms started together with pain in my right testicle, following what I believe was a  physical trauma of my right testicle I sustained during a spinning class (indoor cycling, balls squeezed on a hard saddle). I did have surgery (based on a wrong diagnosis) and two day relief after the surgery... until my first post-surgery ejaculation (see previous posts). Since then I am in constant POIS with right testicle pain, severity of both depending on sexual activity (always on a scale between 'bad' and 'worse').

I learned about POIS but did not know what to do about it, educated myself, and suffered throughout the last year... Only at the beginning of 2012 did I have the courage to make an appointment at my local university hospital. I specifically asked to talk to an immunologist but had to see a hospital GP first. I presented all the research you collected (waldinger everything else I could find), had all the usual tests done, including a p r i c k test with my own semen and a spermiogram. Basically all without any real results (as expected), Vitamin D deficiency, no allergy to my semen, spermiogram not great but something still seems to be alive.

My theory:
I have suffered a physical trauma to my right testicle through which immune cells gained access to the testicular microenvironment. Thus, the immune privilege might be broken and immune responses no longer suppressed. I came up with the suggestion to test this by pharmacological suppressing my immune system, just as it is for example done with transplant patients to prevent foreign tissue from being rejected. I dug up this seemingly unrelated info (http://en.wikipedia.org/wiki/Sympathetic_ophthalmia) about a rare eye disease, the eye also being an immune privileged site. Interestingly the preferred treatment is immunosuppressive therapy... Digging around a bit in medical literature I downloaded some bits and pieces from Google books, which you can find at the following location: http://min.us/myITMUQnQ
Most of the pages will not be relevant to you but have a look at diseases_1.jpg. The table is an excerpt from a 1993 paper of Rose/Bona, modifying something called "Witebsky's postulates". I did not get access to the 1993 paper (30USD) but the Witebsky criteria have to be met for a diseases to be classified as an autoimmune disease. I am not sure about the generally accepted status of POIS, is it actually classified as an autoimmune disease?! If so, on what basis? The evidence that has to be met according to the table is rather difficult to gather and it might not happen during our lifetime... BUT Level 3.6: RESPONSIVENESS TO IMMUNOSUPPRESSION !!! There it is again, and to me it is perfectly logical and just makes sense. I believe my symptoms to be autoimmune related, if this is indeed the case, symptoms should be diminished / vanish if the immune system is somehow suppressed.

Still I was not allowed an appointment with an immunologist before seeing a specialist for psychosomatic medicine / sexual therapy. The Prof completely ignored any facts I presented, alluded to my anxiety (very surprising after two years of continued POIS suffering) and proposed the usual psych therapy including SSRI's etc. I left after the second session. Being finally granted an appointment with the immunologist after five months, he also was very reluctant to pursue the immunosuppression route. I had to listen to numerous arguments why not to do it, how dangerous it is, sideffects etc (not that millions of transplant patients worldwide are living under immunosuppression, immunosuppression being indicated for several autoimmune diseases), that we would not gain anything from this exercise since I cant live my whole life with my immune system being knocked out (Knowledge gained?! Understanding of the POIS mechanism?), and the best one, that he could give me only 1/100th of the dose that would be indicated for eg the special eye case since I dont have anything SERIOUS!!!  :o In order to get rid of me, to postpone decisions, and not to take any risks on his side, he sent me to urology again to take a biopsy of my right testicle to look for the infiltration of any inflammatory cells, which would support my theory. Four weeks later I had the appointment, the evening before I had some ejaculations to be sure to be in worst POIS state when the procedure was performed. The doc (he did not see me before) arrived 15min late, that was the time it took him to read up on my file. You can be sure that he never heard of POIS before, did not read a single paper on the topic and my file was the first time he was confronted with any of this... still the first thing he could tell me for sure when he entered was that POIS does not exist. Usual procedure of ignoring my arguments, using my POIS state against me by telling me what a clear case for a psychologist I am ("dont worry, in the US everybody has a shrink!") and that I should just IGNORE my symptoms! He refused to do the biopsy (probably for the better, its quite an invasive procedure that I rather go without) and sent me home with a prescription for Voltaren :o ... what a joke, never met anybody as prejudiced and arrogant as this guy.

So here I am... tomorrow I have a call with the immunologist again, I will try to make an appointment to start a diagnostic immunosuppression but the answer I will get is pretty clear, he will refuse to do it...

My problem is I cant go on living like this, I am almost unable to work, the way I feel EVERY morning you would normally not even get out of bed and just call in sick... I would like confirmation or rejection of my autoimmune theory based on facts so I can make an informed decision on how to continue... but most likely I will even be denied my diagnostic proposal. Most likely I will be denied any further help in this developed medical system and might be forced to seek help outside... like animus did.

Any suggestions, feedback, options?

[eur79m]

Just a quick follow-up, forgot to mention that there actually is something called 'autoimmune orchitis' which is an autoimmune inflammation of a testicle:
http://www.ncbi.nlm.nih.gov/pubmed/21842235
http://autoimmune.pathology.jhmi.edu/diseases.cfm?systemID=3&DiseaseID=20
http://www.preservearticles.com/2012032028162/what-is-autoimmune-orchitis.html

Not directly relevant to you but I believe that this is the cause of / related to my POIS...
Interestingly one of the articles mentions 'testicular atrophy', a shrinking of the testicle. The urologist told me that mine are 'smaller than usual' but that doesnt mean anything... certainly not in connection with my autoimmune hypothesis *sarcasm off* ... Autoimmune orchitis was never mentioned during the talk with the urologist, however he seemed to have a lot of knowledge in the psychological field *some more sarcasm* ...

[Starsky]

What about testosterone treatment, if nothing really works you could go for the Animus solution.

[kurtosis]

My theory:
I have suffered a physical trauma to my right testicle through which immune cells gained access to the testicular microenvironment. Thus, the immune privilege might be broken and immune responses no longer suppressed. I came up with the suggestion to test this by pharmacological suppressing my immune system, just as it is for example done with transplant patients to prevent foreign tissue from being rejected. I dug up this seemingly unrelated info (http://en.wikipedia.org/wiki/Sympathetic_ophthalmia) about a rare eye disease, the eye also being an immune privileged site. Interestingly the preferred treatment is immunosuppressive therapy... Digging around a bit in medical literature I downloaded some bits and pieces from Google books, which you can find at the following location: http://min.us/myITMUQnQ
Most of the pages will not be relevant to you but have a look at diseases_1.jpg. The table is an excerpt from a 1993 paper of Rose/Bona, modifying something called "Witebsky's postulates". I did not get access to the 1993 paper (30USD) but the Witebsky criteria have to be met for a diseases to be classified as an autoimmune disease. I am not sure about the generally accepted status of POIS, is it actually classified as an autoimmune disease?! If so, on what basis? The evidence that has to be met according to the table is rather difficult to gather and it might not happen during our lifetime... BUT Level 3.6: RESPONSIVENESS TO IMMUNOSUPPRESSION !!! There it is again, and to me it is perfectly logical and just makes sense. I believe my symptoms to be autoimmune related, if this is indeed the case, symptoms should be diminished / vanish if the immune system is somehow suppressed.

Still I was not allowed an appointment with an immunologist before seeing a specialist for psychosomatic medicine / sexual therapy. The Prof completely ignored any facts I presented, alluded to my anxiety (very surprising after two years of continued POIS suffering) and proposed the usual psych therapy including SSRI's etc. I left after the second session. Being finally granted an appointment with the immunologist after five months, he also was very reluctant to pursue the immunosuppression route. I had to listen to numerous arguments why not to do it, how dangerous it is, sideffects etc (not that millions of transplant patients worldwide are living under immunosuppression, immunosuppression being indicated for several autoimmune diseases), that we would not gain anything from this exercise since I cant live my whole life with my immune system being knocked out (Knowledge gained?! Understanding of the POIS mechanism?), and the best one, that he could give me only 1/100th of the dose that would be indicated for eg the special eye case since I dont have anything SERIOUS!!!  :o In order to get rid of me, to postpone decisions, and not to take any risks on his side, he sent me to urology again to take a biopsy of my right testicle to look for the infiltration of any inflammatory cells, which would support my theory. Four weeks later I had the appointment, the evening before I had some ejaculations to be sure to be in worst POIS state when the procedure was performed. The doc (he did not see me before) arrived 15min late, that was the time it took him to read up on my file. You can be sure that he never heard of POIS before, did not read a single paper on the topic and my file was the first time he was confronted with any of this... still the first thing he could tell me for sure when he entered was that POIS does not exist. Usual procedure of ignoring my arguments, using my POIS state against me by telling me what a clear case for a psychologist I am ("dont worry, in the US everybody has a shrink!") and that I should just IGNORE my symptoms! He refused to do the biopsy (probably for the better, its quite an invasive procedure that I rather go without) and sent me home with a prescription for Voltaren :o ... what a joke, never met anybody as prejudiced and arrogant as this guy.

So here I am... tomorrow I have a call with the immunologist again, I will try to make an appointment to start a diagnostic immunosuppression but the answer I will get is pretty clear, he will refuse to do it...

My problem is I cant go on living like this, I am almost unable to work, the way I feel EVERY morning you would normally not even get out of bed and just call in sick... I would like confirmation or rejection of my autoimmune theory based on facts so I can make an informed decision on how to continue... but most likely I will even be denied my diagnostic proposal. Most likely I will be denied any further help in this developed medical system and might be forced to seek help outside... like animus did.

Any suggestions, feedback, options?

I empathise with your troubles with the medical profession. I think everyone here has been told at one stage or another they're suffering from an anxiety disorder. It's a self-confirming diagnosis and anything you do to fight it just convinces the "expert" making it that you're anxiety and obsessive.

Whatever the reason for the POIS reaction, it's interesting to consider what treatments have "cured" POIS in the few people on the forum who have reported dramatically improved conditions. For example, testosterone therapy could make sense in the context of an autoimmune disease.  Read http://www.sciencedaily.com/releases/1999/10/991007083730.htm

[Omen 30]

Abstinence is causing stress and anxiety in me,which in turn is giving me heavy brain fog...strange,pois like symtoms without O or NE...

[Omen 30]

I think difficulties faced after an Orgasm or a NE are just a signal and the real culprit is something else...maybe some deficiency or maybe obesity or stress etc...

[observercenter]

I think difficulties faced after an Orgasm or a NE are just a signal and the real culprit is something else...maybe some deficiency or maybe obesity or stress etc...

Hi Omen, this has been reported before. I got mild cognitive problems(they did not affected my mood, but i noticed a minor brain fog) that lasted a few hours -nothing really important- after making an oral presentation in class just few months ago - I made a good, clear presentation but due to the tension my face turned red (I was not the only one who got a red face during the presentation, the heating could have been other factor), and i got very mild cognitive symptoms moments after my presentation ended  . That made me wonder how this event could be related to our POIS...

[martin88]

Great news Nightingale! Be sure to request an intradermal test in addition to (or instead of) the p-rick test. Waldinger describes "intracaneous injections" (AKA intradermal test) but refers to them as p-rick test in his paper. A p-rick test is just that -- a small skin p-rick with the allergen. In an intradermal test, the allergen is physically injected with a syringe just below the skin.

My previous hypothesis about your experience and saline injection causing side effects is loosing credibility if the injection was intradermal. Sorry for my flawed theories. I've always been skeptical about the allergy theory but the fact this shot caused a strong POIS is amazing.

[Starsky]

Just a quick follow-up, forgot to mention that there actually is something called 'autoimmune orchitis' which is an autoimmune inflammation of a testicle:
http://www.ncbi.nlm.nih.gov/pubmed/21842235
http://autoimmune.pathology.jhmi.edu/diseases.cfm?systemID=3&DiseaseID=20
http://www.preservearticles.com/2012032028162/what-is-autoimmune-orchitis.html

Not directly relevant to you but I believe that this is the cause of / related to my POIS...
Interestingly one of the articles mentions 'testicular atrophy', a shrinking of the testicle. The urologist told me that mine are 'smaller than usual' but that doesnt mean anything... certainly not in connection with my autoimmune hypothesis *sarcasm off* ... Autoimmune orchitis was never mentioned during the talk with the urologist, however he seemed to have a lot of knowledge in the psychological field *some more sarcasm* ...

But for me your condition looks like POIS caused by permanent leakege or spermatorhea.

[eur79m]

spermatorhea.

I never heard of 'spermatorhea' and dont seem to find any factual information on this.

[demografx]

What about testosterone treatment, if nothing really works you could go for the Animus solution.

Testosterone cured my POIS.

But if you're planning a family, there are fertility risks you should discuss with your doctor.

[daveman]

The following post
http://poiscenter.com/forums/index.php?topic=423.msg4803#msg4803
is about something I’ve noticed before, that a full and complete “O” seems to produce less symptoms than a partial or restricted one. In part it could be to do with retro-ejaculation (during a bad “O”), which for me causes much worse POIS, or it could be to do with the PGD2 and PGE2 cycles. Not being to up on the biology, could somebody check out the referenced post and comment.

It seems that niacin for instance feeds the creation cycle of these prostaglandins, and if we orgasm too early the bad PGs are bolstered, whereas if we wait, the good ones are bolstered. Do I have this right?
In the post above,  the dreamy state he mentions is associated with what I have felt when I “O” early with too much niacin. However the benefit of the niacin is not as strong when that happens.

However like him, if my “O´s” are complete (in a  non-niacin scenario) the dreamy state is more prevalent yet my symptoms are less.

Can anyone decipher this?

[observercenter]

Hi everyone!!

I read some days ago a very sad story about an old woman - bus monitor - who was bullied by some "stupid"(i am restraining myself) kids on the bus in New York. They made the woman cry, and the despicable event was recorded. The event went viral and the media is airing this episode all over the world: http://edition.cnn.com/2012/06/21/us/new-york-bullied-bus-monitor/index.html

Their relatives have made a crowd-sourcing event (like the one we did on reddit) to appeal to the society to raise 5.000$, so she could be able to pay for a good holiday/travel, "The holiday of her life", because she deserved it. Guess what, she has got nearly 500.000$ from anonymous donations in two days!!!.

The crowd-sourcing event was posted in the page Indiegogo, which it is specialized in crowd-sourcing events ("The world funding platform") to fund every type of cause. They have several sections and one is dedicated to health issues.

Here is the link:
http://www.indiegogo.com/
http://www.indiegogo.com/projects?filter_category=Health -> You could see here some examples.
http://www.indiegogo.com/happiness/campaigner -> Very useful tips on how to make a succesful campaign! I suggest you to read these!!
http://www.indiegogo.com/loveforkarenhklein?c=home&a=748386 -> The campaign of this noble woman.
 
Maybe we could start a campaign for our NORD cause. Though it is impossible to replicate the success of this woman, every little contribution would add up and we could be near of our objective. What do you think?
I encourage you to do some brain-storm here, to try to present our cause in a simple, and at the same time, profound way that would need to appeal directly to the people´s compassion- without forgetting to back it with scientific sources and the material we have collected till now.

So if you want to collaborate, post your thoughts and ideas here or send me a PM. We would need a team like in our reddit experience to comment in this site. We could talk over it.
 
Cheers!

[demografx]

We wanted to let you know that the management has asked us that there
should be no promotion of NORD fundraising nor our other forum here.

Daveman
Demografx

[nordnurse]

We wanted to let you know that the management has asked us that there
should be no promotion of NORD fundraising nor our other forum here.

Daveman
Demografx

Well, with them or without them, the war on POIS will continue to be waged, and you'll raise your funds. 
This is a very strong, cohesive group that has grown up over the past year -- and you have each other, Demo, and Daveman! 

That's all you need for success. :-)

Stef

[demografx]

THANK YOU, STEF.

YOU ARE A TRUE FRIEND.

Demo

[John21]

We wanted to let you know that the management has asked us that there
should be no promotion of NORD fundraising nor our other forum here.

Daveman
Demografx

Do we know why management of TNS is against fundraising on the site's forum?

[demografx]

Good question, John, feel free to ask them.

[lauracostis]

Hi everyone!!

I read some days ago a very sad story about an old woman - bus monitor - who was bullied by some "stupid"(i am restraining myself) kids on the bus in New York. They made the woman cry, and the despicable event was recorded. The event went viral and the media is airing this episode all over the world: http://edition.cnn.com/2012/06/21/us/new-york-bullied-bus-monitor/index.html

Their relatives have made a crowd-sourcing event (like the one we did on reddit) to appeal to the society to raise 5.000$, so she could be able to pay for a good holiday/travel, "The holiday of her life", because she deserved it. Guess what, she has got nearly 500.000$ from anonymous donations in two days!!!.

The crowd-sourcing event was posted in the page Indiegogo, which it is specialized in crowd-sourcing events ("The world funding platform") to fund every type of cause. They have several sections and one is dedicated to health issues.

Here is the link:
http://www.indiegogo.com/
http://www.indiegogo.com/projects?filter_category=Health -> You could see here some examples.
http://www.indiegogo.com/happiness/campaigner -> Very useful tips on how to make a succesful campaign! I suggest you to read these!!
http://www.indiegogo.com/loveforkarenhklein?c=home&a=748386 -> The campaign of this noble woman.
 
Maybe we could start a campaign for our NORD cause. Though it is impossible to replicate the success of this woman, every little contribution would add up and we could be near of our objective. What do you think?
I encourage you to do some brain-storm here, to try to present our cause in a simple, and at the same time, profound way that would need to appeal directly to the people´s compassion- without forgetting to back it with scientific sources and the material we have collected till now.

So if you want to collaborate, post your thoughts and ideas here or send me a PM. We would need a team like in our reddit experience to comment in this site. We could talk over it.
 
Cheers!

What would we do to get people to come to our campaign home page to donate. 

[kurtosis]

The following post
http://poiscenter.com/forums/index.php?topic=423.msg4803#msg4803
is about something I’ve noticed before, that a full and complete “O” seems to produce less symptoms than a partial or restricted one. In part it could be to do with retro-ejaculation (during a bad “O”), which for me causes much worse POIS, or it could be to do with the PGD2 and PGE2 cycles. Not being to up on the biology, could somebody check out the referenced post and comment.

It seems that niacin for instance feeds the creation cycle of these prostaglandins, and if we orgasm too early the bad PGs are bolstered, whereas if we wait, the good ones are bolstered. Do I have this right?
In the post above,  the dreamy state he mentions is associated with what I have felt when I “O” early with too much niacin. However the benefit of the niacin is not as strong when that happens.

However like him, if my “O´s” are complete (in a  non-niacin scenario) the dreamy state is more prevalent yet my symptoms are less.

Can anyone decipher this?

Good versus bad seems to a complicated determination to make in relation to prostaglandins. I found an interesting article at http://www.pensgard.com/nutrition/4_Prostaglandins.htm
I don't have access to the original article but I did find some references on pubmed to support their description.

We know niacin releases pgd2 into the skin to produce flushing. http://www.ncbi.nlm.nih.gov/pubmed/1373750
Some of our symptoms like gastrointestinal issues could be explained by an overproduction of PGE1. However cognitive impairments from a prostaglandin imbalance may  come from a deficiency of PGE1 (perhaps causing schizophrenia) or an increase in TXA2 causing depression.

There have been a few articles published which hypothesise that schizophrenia could be related to prostaglandin synthesis. Some of which hypothesise that some "successful" anti-schizophrenic drugs work by increasing prolactin levels and encouraging prostaglandin synthesis. However, medical science knows more about the different flavours of prostaglandin now so it's not merely a case of raising levels of all prostaglandins.

The schizophrenia and prostaglandin connection doesn't seem to have gone away. Here are some articles from pubmed.
http://www.ncbi.nlm.nih.gov/pubmed/67391
http://www.ncbi.nlm.nih.gov/pubmed/3520252
http://www.ncbi.nlm.nih.gov/pubmed/20446881
http://www.ncbi.nlm.nih.gov/pubmed/21334179

Mice too http://www.ncbi.nlm.nih.gov/pubmed/19416671
The article about PGE2 receptors in mice is very interesting as it appears medical researchers are figuring out that low levels of PGE2 may be implicated in diseases like ALS and alzheimers.

Niacin stimulates the synthesis of... You guessed it.. PGE2.
http://www.ncbi.nlm.nih.gov/pubmed/22442634

So why would this be related to POIS? Simply because during an O we produce prolactin. Too much or too little would be a problem and would likely indicate a problem with balancing PGE2 levels.
 
A diet with too much trans fatty acids will inhibit prostaglandin production while a diet with enough b vitamins, protein, zinc, vitamin E and essential fatty acids (from fish oil for most people) could regulate production. What the right amount is and whether some unknown disease could affect the levels of synthesis is a mystery to me. It seems that any b vitamin deficiency, nutrient absorption problem or b vitamin deficiency could produce symptoms of cognitive impairment. 

Another problem may be a mutant delta-6-desaturase gene as hypothesised in http://www.ncbi.nlm.nih.gov/pubmed/3520252 or
some variant of a d-6-d malfunction.
(I have no idea whether any conclusive research has been done on the mutant d6d hypothesis but I do know that some research exists showing that arachidonic acid given to early stage alzheimer patients can lead to some improvement on cognitive tests).

If this was the case then there wouldn't be enough omega 6 fatty acids in the diet for prostaglandin synthesis. This seems unlikely given our diets are generally omega-6 rich but I've read some anecdotal reports of people who believe they're suffering from pyroluria (not getting into a discussion about whether this exists) that claim substantial improvements in concentration, anxiety levels and sleeping patterns when they supplement with zinc, b6 and arachidonic acid.

There could be an insufficient amount of ALA in the diet to produce Arachidonic acid or an inability to synthesise AA from ALA. http://en.wikipedia.org/wiki/Linoleic_acid

It's worth noting (after reading http://poiscenter.com/forums/index.php?topic=423.msg4803#msg4803) that liver was used to treat pernicious anaemia in the days before b12 injections and is also high in arachidonic acid.

[kurtosis]

dear member, sorry if I use your post for other goal. for a whole weekend i try effortless to do what everybody wants to do here when first arrived at 'pois hospital'. to post a post. It drives me mad to see only reply buttons, but no 'post your own post 'button.
please gide me to post my first post to the members. A  desperate Dutchman. I have been accustomed at many forums but this one seems to be for only the more  intelligent pois sufferers. ( nomen =omen..scientists forum) But the dummies like me  whithout scientific education need pois relieve and contacts  too. please help me to add my own post with all biographical data of my treatment and pois hystory. Thanks in advance , Tantalus

Hi Tantalus. Every post to this forum is a reply. That's how the forum works. Just keep replying and don't worry about it !!

[tantalus]

                              Dear fellow  'lads'with P.O.I.S.

Lauracostis,Vandemolen, John21, Daveman, Demografx,
THANK YOU FOR HE WARM WELKOM, and the tips to jump to alternatives


 Like to introduce myself here as new 'Dutch languaged' member. Did only read a view posts since 2006, but will be here now on weekly basis. Like to help document p.o.i.s treatment, monitor the psychological aspects of integrating the syndrome in social live, sharing insight in progress as well  back-fall. Radiate a critical eye over my own process as well the opinion of others that will ask or tell here whatever comes up.

My P.o.i.s.  was Official diagnosed in 2004 by its 'inventor' prof M. Waldinger. I am one of the about 40  patients that is described in  Waldingers article in 2011, that undergo the subcutaneous test. [to test/prove if its an allergy or just a newage neurosis ;) ]  Also if you are new to the allergy hypothesis [which I still approve,but*....], see also his article written  2011  in witch he describer 2 patients  who go successfully a desensitization therapy http://www.thenakedscientists.com/forum/Smileys/default/icon_smile_shy.giftp://www.tandfonline.com/doi/abs/10.1080/009262302760328280

I did undergo the desentization also, and am  almost at the end of it ....[and with it ;>) ]

Treated with dedesentization, partially progressed but still in  therapy. My therapy takes now about 4 years. Not finished yet. Later on I will describe the effects of the therapy and its side effects during time between the injections. Content with actual state of progress? Sorry, NO**. Of course  much lesser days sick and lesser outlaw of society but still 1 or 2 days  frustratingly under influence of  cognition symptoms and therefore  wiser  hiding for certain social contacts those days. The progress is also floating***

The treatment policy was to keep treatment quiet for the world until first results were published.  Also the goal was not to interfere with other treatments, to keep results objective. Now the end of desensitization cums near [I went from 1 to 40.000 tot 1 to 3], I like to consider adding some help of complementary therapy. Of course I cannot read backwards all 367 posts here before I say /ask needless things, but I hope not to miss alternative healing methods or  tips to help my body accept his own sperm. Need your help to inform me postpone what i can do.

you know already (see my post on naked scientist 24/6/2012) my sidekick  to progesteron became a disappointment .postpone addition:I just removed my former post in which I described the exerience , it would be to much for you to read, added it at the p.o.i.s. centre topic hormonal causes ... Whether 2x 5 mg was to less to work, or even enough to interfere negative if of later discussion, If  the skin itches so badly for 3 days it worked in any case!! ...my advise keep your hands of it till all  experienced are bundled here later.   I did read here before already  and in Wiki that a patient was cured!?? with progesteron supletion. Others on pois fora about 6 ? do experiments with it. At the moment i dont have info how the patients react on the progesterone. My first opinion is that the claims are dangerously vague and paradox. but have to read everything over again to 'shoot on it' successfully.

Have no clue if there are complimentary treatment methods. At the moment I get vitamin D supletion, since that is done for now on for all sufferers of all kinds of allergies. My specialist   will monitor progress with  the already started vit D supletion.


My allergist  ( keep him anonymous), tested hormones etc
for further future use/research
Vit D [normal nmol/l >50] …........= 25.6. wich is to low, testosteron, [nmol/l 12-35] …..….=19.0) is ok
progesteron, [nmol/l 0.89-3.88]     =  <0.64)......[this result made me giving the progesteron  the benefit  of the doubt ]......so its intresting it did not help but even 'harm' to get it on normal level  (0.89)
FSH U/l 3-15                               =7.0
sex HBG, nmol/l 20-70 …............=42
LH, U/l 1-8...................................=5,8blood.....
Hemoglobine , nmol/l 8.5-11.......=8.8
Ige ku/l <114....... ….....................=9
My Ige before desensblstn Was 12 now 9  this looks intresting  , but does not ‘say’  a lot. ****
since patients can experience  strong reactions with Ige levels that indicate opposites.Thats exactly so interesting with our allergy. It does not follow the usual  Ige interpretation strategy. For exact explanation of this paradox ask your own specialist.

again about progesterone:
> WIKI “Dexters patient was completely treated (COMPLETELY TREATED ??!!) By 5 to 10 miligrames norethisterone Well….: treated for sex related headaches or pois??  And in witch intervals the tablets are taken. And also in the days without sex? What is the effect on the organism on the long term?   Is there anybody that has spoken to dr. Dexter or his  patient, and !!! how  the present situation is of that patient. Is there any administrator of any poisforum that keeps monitoring the others progesteron  adepts.
> “Certainly POIS Sr. member of poiscenter writes in
poiscenter.com/forums/index.php?topic=74.msg476#msg476   Dosage 5-15 mg about 1.5. Hours before orgasm but no longer as 12 hrs.
Others, (cant remember the source, sorry)….do take a tablet also after the sex, but how long after is not mentioned.
Dear  pois fellows…Please let us document this experiments more precise from now on.  I and you and we are walking  complete in the dark now.

Pois and isolation even in the own group: I like to take advantage to come in contact with other dutch patients . In 2004 I was promised to be united with the others, but during the cure never an attempt is done to unite the ones who wanted this.
Dus jongens, mannen  meldt je [weer] bij me .

...about this forum ......disapointingly, to me being on this site is   almost nobody did effort to ad a biography part  in his/her profile. May I invite you to change this, and add some info who you are , why not even your hobbies, and the way you got the clue about your pois, single or not, books who helped you sublimate, what keeps you happy against all odds. Our cause to be here could do it with some prettier info too to digest the serious subject better, and makes us feel recogniced also in nicer side of live. :) ^

my own biography:

    Dutch,Virgo (25 august),age >45,  profession paramedical, study philosophy, Pois diagnosed officially, with hint to  chain reaction short memory, herpes, (and  in my case very rare HS2 menigitis) since I try to stop 'shooting' attacs and chain reactions are less.  I am set free from job obligation, so all time for  hobby's: pipe organ (www.Hauptwerk.com) massage, hi end, Bach,  esspresso making, parfume,cosmology ,facebook, I am Dutch NVVE (exit) member, accepted for assisted fulfilled live,  Am glad with every love i get from people around and am never depresst, dissapointed YES but lingeing in depression is a masogistic habit. Not my style. Becouse I have POIS, I am extremely happy with all small gifts in Live, One of them are open people that can give! I meet them often because I am open too. I  like friendly irony, my hero's...Voltaire, David hume, Dame Edna, movy's: Bad day at black rock, Lemming, Arteficial intelligence, the Virgin Queen, I am single, for those it matters I am gay, and had 2 relationships which were nightmares for my partners, the last partner 'engaged' me with prof Waldingers theory, and immediately emigrated far away;>)reading/writing   ironic tekst/literature   is my mental food, speak german , my escape from pois is the typical Freudian, enjoy food like grate German  pastry. Favoured place: the Alps, work as volunteer for  people that had a stroke.

* start to doubt if an allergy itself could not again be a result of other precursor [ design errors in our dna,genes,might we have 2 dna profiles like is already proven in other cases in the the forensic  science....but that is only my intuition/wild guess  8)

(will work out  the other asterisks in later posts) and sorry the smileys dont work.

I will update  this post and biografy regulary , so this is no static post...come back...............like your comment

[meteo74]

Does P.O.I.S. affect Female ???
surely no, so that support that O. decreases some thing in the body and what is it??
please let me knowwwwww.!!!!

[tantalus]

I can hardly contain myself:  this allergist I saw almost a year ago just contacted me this morning after "reading an article in a magazine (I don't know which one yet) that described exactly what you were complaining about."  She contacted someone at the University of Virginia, just two hours away, and found out there was someone "very interested" in seeing me!  I know for sure that they talked about performing a pin ***** test, as that is what I was trying to do at my allergists but they did not have the equipment to perform it like Dr. Waldinger does for diagnosis.

I'm waiting to hear back on an appointment time at the university, and I'll try to find out what "magazine" this was that made it to my allergist's hands!

Keep up the hope  ;D ;D ;D ;D ;D ;D ;D ;D ;D

Great news Nightingale! Be sure to request an intradermal test in addition to (or instead of) the p-rick test. Waldinger describes "intracaneous injections" (AKA intradermal test) but refers to them as p-rick test in his paper. A p-rick test is just that -- a small skin p-rick with the allergen. In an intradermal test, the allergen is physically injected with a syringe just below the skin.

TO NIGHINGALE & HOPING

I agree fully with Hoping. But 2 corrections.
prof. Waldinger does not test himself (but that's not of importance), he coordinates the results and publishes the study in cooperation with the allergist specially motivated to work with our problem.

The first  test if you are positive [ and HOW positive...there is a scale 1 to 5 or 6?] is here in Holland called a subcutane test.
What hope writes about the intradermal 'test' might led to misunderstanding.
The intradermal  follow up after the first test.  Is NOT a test anymore but the desensitization treatment itself. So, its not a test any-more but the treatment itself.

It starts with 2 injections at intermediation of 1 hour or so.

first dosage with water diluted sperm is 40.000 'units' water to 1 unit sperm.
almost a homeopatic dosage.  the second 20.000 to 1
In case you might feel not well [dont worry, nothing happens] you wil get the second dosage an other day. 

The first treatment is to see how big the red reaction spot on your arm will get. If you get a to small spot you are less sensitive [not the worst pois patient], so you can get more injections that day.

the next week or day [ depends on the time scale they will choose for you], you get  1000, then 800 then you wil come 4 weeks later and so on til you get 1 to 1 .

Well i explained more as i intended. Be patient your doctor will tell you all. And might change the intervals a bit. In holland we had to invent the wheel, so the therapy will develop and change dependent on the results and feed back of the patients.

good luck

p.s. the point is .....when you would get an injection with sperm as a first test( to see IF you react at all) you would get a much to strong alarm effect. Thats why I had e problems with the word combination
     >intradermal test<
I hope my Flintstone english is understandable for you both.

[Druid Getafix]

Hi tantalus,

"Pois and isolation even in the own group".

Just curious: Who promised you (and the other guys) in 2004 to be united?

Thanks in advance!