[Counterpoints]

Limejuice -- I think your story is positive by the way.  It's good that some tests are being done even if the results are not being paid attention to that much.  Good job and keep up the interesting investigation if possible.

[Vandemolen3]

Yakult is good for hay fever

    Friday, June 10, 2011 | 12:57 | Last updated: Friday, June 10, 2011 | 1:18 p.m.

 WAGENINGEN - Bacterial drinks like Yakult and Vivit, allergic symptoms from pollen, such as hay fever, significantly reduced. The drinks, called probiotics, namely the reduction of immune proteins that play an important role in a hay fever allergy.
  At the same time stimulate the production of allergy-inhibiting substances.

 According to research by Yvonne Fisher University of Wageningen.

...sorry, you cannot view external links. To see them, please REGISTER or LOGIN

[Vandemolen3]

I know that not every allergy is the same, but it's worth trying. I used to drink probiotics for my intestines. But that didn't help. Now I know that my problem them was UTI and stress.

[Animus]

NORD-POIS International Option


The research fund online donation site can now accept international donations.  NORD received two today (not POIS) -- one from London, the other from Australia.

Go to:  
...sorry, you cannot view external links. To see them, please REGISTER or LOGIN

Write street address, city, and country in "Address 1"


Click the drop down for State, and the word International comes up -- click that.

The rest is self-explanatory.

THANK YOU, STEFANIE!

demo-
your new avatar...

[lidridop]

This probably seems a little bit too obvious and I'm sure it's been tried by a member at some point. But a good friend of mine takes an ANTIHISTAMINE daily for relief from a whole load of symptoms and allergies including : wheat, dairy, chocolate, yeast, hay-fever etc.

If POIS (arguably) is a reaction to semen, am I naive enough to hope that an antihistamine or something similar will have a positive effect on the level of symptoms felt?   []

[Vandemolen3]

This probably seems a little bit too obvious and I'm sure it's been tried by a member at some point. But a good friend of mine takes an ANTIHISTAMINE daily for relief from a whole load of symptoms and allergies including : wheat, dairy, chocolate, yeast, hay-fever etc.

If POIS (arguably) is a reaction to semen, am I naive enough to hope that an antihistamine or something similar will have a positive effect on the level of symptoms felt?   []

A lot of members tried it, but no result.

[demografx]

POIS is now on Facebook
...sorry, you cannot view external links. To see them, please REGISTER or LOGIN

[demografx]

demo-
your new avatar...

Thanks, Master Yoda!

"Ben"

[daveman]

This probably seems a little bit too obvious and I'm sure it's been tried by a member at some point. But a good friend of mine takes an ANTIHISTAMINE daily for relief from a whole load of symptoms and allergies including : wheat, dairy, chocolate, yeast, hay-fever etc.

If POIS (arguably) is a reaction to semen, am I naive enough to hope that an antihistamine or something similar will have a positive effect on the level of symptoms felt?   []

A lot of members tried it, but no result.

I wonder if it's not because the antihistamine is more effective for type I allergy. And although it could reduce the type I reactions, it leaves the type IV relatively untouched. So we don't notice a big relief, especially for those who have deeper type IV influence.

[John21 (OP)]

It's great to see everyone contributing what they can to research. Before contributing I would like to know more about where the money goes, and who decides what to do with it. I searched around on the NORD site but I didn't see this information. Could someone like Waldinger have access to it? Is that determined by NORD?

[Counterpoints]

It's great to see everyone contributing what they can to research. Before contributing I would like to know more about where the money goes, and who decides what to do with it. I searched around on the NORD site but I didn't see this information. Could someone like Waldinger have access to it? Is that determined by NORD?

Yes, this is something that occurred to me also.  How much of this money does NORD get?  How do they decide who to give the money to?  Would the money just go to one person (or group), or multiple researchers?  Will they be specific about how they will spend our money?  Can we specify somewhat how we want the money to be spent, or have a 'veto' if we do not like how a group plans to spend our money?  e.g. ideally we would want to spend it on things like diagnostic tests, functional imaging, and so on, and not on 'administrative costs', etc.  We would also want to make sure that some group who was already doing research on this doesn't just grab the money.  We need our money to make a difference.  We would want it to encourage people to do some really world class research on this rare disorder, which wouldn't have been possible, or would have been really unlikely, without our money.

I am sure some (but not all) of the answers are on the NORD website, but it may be useful to have them addressed in the forum somewhere. 

[demografx]

Lots of previous POIS Antihistamine discussion:
http://www.google.com/search?q=antihistamines+POIS+site:http://thenakedscientists.com&ie=UTF-8&oe=UTF-8&hl=en&client=safari

[demografx]

Many of your NORD-POIS questions can be answered here:
...sorry, you cannot view external links. To see them, please REGISTER or LOGIN

Whatever has not been already answered, I'm sure Stefanie will address here.

You can also write to her at:
rn@rarediseases.org

[demografx]

As an added note, you are obviously free to choose another funding venue. Many of us feel very strongly about NORD and their incredible dedication to us specifically at the POIS forums. But if you disagree, then by all means don't contribute.

[Counterpoints]

Many of your NORD-POIS questions can be answered here:
...sorry, you cannot view external links. To see them, please REGISTER or LOGIN

Whatever has not been already answered, I'm sure Stefanie will address here.

You can also write to her at:
rn@rarediseases.org

Thanks for the link.  This answers most of the questions.

[Counterpoints]

A response to something she wrote in that post:

it's unclear whether "post-orgasmic illness syndrome" is the best name for this syndrome, since apparently an ejaculation is not always necessary to go under the spell of POIS. "autologous semen illness," or "autoimmune seminal fluid syndrome," may be a more succint term. Just a thought that I wanted to share.

We have discussed this here at some length.  I think post-orgasmic illness syndrome is a good name, precisely because, as you say, ejaculation is not necessary.  Orgasm does not imply ejaculation.  The Semen illness and autoimmune X would be much worse than POIS, because we don't whether this has anything to do with semen, and we don't know whether it's autoimmune.  The name POIS says broadly what this problem is without making incorrect assumptions.  (Yes, it may not include absolutely everything described here, but it is true that everyone here does suffer from symptoms following orgasm -- they do have some sort of post orgasmic illness -- and often it is exclusively after orgasm).

I am skeptical of the autoimmune hypothesis.  I think it is possible, and even somewhat likely, but no more than 50% likely to be true.  There are other major contenders.  I think it's absolutely critical that hormonal and neurological possibilities are also looked into.

[demografx]

I am skeptical, too re autoimmune as the one-and-only. Hormonal, neurological, and WHATEVER-is-a-reasonable-hypothesis must all be taken into account.

[demografx]

CP, I argued the same point about the  POIS name privately with Stefanie. NORD is ok with POIS  now.

The main consideration in the future: what is the BEST name to attract maximum $$$$ for researching our condition?

[Counterpoints]

The main consideration in the future: what is the BEST name to attract maximum $$$$ for researching our condition?

It's a good question.  I think POIS is a reasonably good name.  No false assumptions, easy to understand, and relevant papers have already been written using this name.  I can see some people thinking it does not sound technical or specific enough.  But I do not think, at this stage, we have a good enough understanding to be more precise. 

I agree with what Stefanie said about how funding will get progressively easier the more credible research is done.  And it was nice to see an emphasis on scientific rigour in her post.

[demografx]

Thanks for that, CP. I am, however, concerned about the lack of control subjects in previous research and how that may possibly affect our credibility. But...it could be argued that it's better than nothing.

[lauracostis]

I created a topic called ...sorry, you cannot view external links. To see them, please REGISTER or LOGIN on the new forum = General Alternatives Causes and Treatment.
I suggest this part to be the one where we can post all our blood tests results since we have POIS.
We could check the fail common standards, compare and investigate more clearly.
As it is expensive, we can see which standards are the most important.

Thank you! []


Mod Edit: Edited in the URL

good job, we cant figure this thing out if we cant look at all the data as a whole.

[John21 (OP)]

Many of your NORD-POIS questions can be answered here:
...sorry, you cannot view external links. To see them, please REGISTER or LOGIN

Whatever has not been already answered, I'm sure Stefanie will address here.

You can also write to her at:
rn@rarediseases.org

That is what I was looking for, thanks. I agree, NORD sounds like a great place to get more research rolling.

[Vandemolen3]

I think it's the best to raise the money through NORD. Setting up an own foundation with a fund will take time. And because it's not easy to talk about POIS, that will make things more difficult. We cannot lose more time. I hope that within a year we raised enough money to start a research. I will make over some money before my holiday.

[demografx]

I will send over some money before my holiday.

Vandemolen, thank you!!

[Pharaoh]

This probably seems a little bit too obvious and I'm sure it's been tried by a member at some point. But a good friend of mine takes an ANTIHISTAMINE daily for relief from a whole load of symptoms and allergies including : wheat, dairy, chocolate, yeast, hay-fever etc.

If POIS (arguably) is a reaction to semen, am I naive enough to hope that an antihistamine or something similar will have a positive effect on the level of symptoms felt?   []

That's how my dr. is treating it.  I'm on daily dosages of Allegra 180mg and Cyproheptadine 4mg.  The cypro is strong and I fell asleep at the wheel on the highway at least 3 times.  Cypro is used to treat a number of illnesses including Hay Fever, PTSD, Cushing's, and Serotonin syndrome.  I've been instructed to take it 2 hrs before an O.  I did today along with rhodiola rosea.  So far, the POIS is still there.  I'm having trouble typing this post.  I also suffered a slight hallucination upon waking up - though I saw a blue spider on the wall.  I kept looking for it until I realized it was never there.  My dr. admitted he has no clue and is "shooting from the hip."  He still doesn't want to request a MRI to check for pituitary adenomas insisting that if I had one, the symptoms would not come and go.  I'm still not convinced. 

[B_Daniel]

I went to my GP yesterday and he for the first time actually knew about POIS and had lots of info on it. He had read the Waldinger study....

dbfd588 - that's awesome that your GP has read Waldinger's study.  Amazingly, the GP I went to last week was familiar with Waldinger's study as well.  This gives me a lot of hope that our study commissioned through NORD will be read by doctors and researchers world-wide!
 
Today I made my first donation to NORD, which was a VERY exciting moment for me!  The remainder of my contribution will be given in increments as we raise more money together.  What's clear to me is that there's only a small group of us, and it really is up to every single one of us to make this dream a reality; so thank you to everyone who has given what you can.  Individually we're weak, but together via this forum and together via research through NORD and just together in general, we are very strong indeed!     

[demografx]

Today I made my first donation to NORD, which was a VERY exciting moment for me!  The remainder of my contribution will be given in increments as we raise more money together.  What's clear to me is that there's only a small group of us, and it really is up to every single one of us to make this dream a reality; so thank you to everyone who has given what you can.  Individually we're weak, but together via this forum and together via research through NORD and just together in general, we are very strong indeed! 

B_Daniel, thank you for both the DONATION and the MESSAGE!!

[demografx]

Rock27, VERY sorry to hear of your problem, it's Sunday night and I contacted Stefanie at home to hopefully resolve first thing Monday morning!

[Mer]

Hi everyone!

I have visited my doctor about 6 weeks ago and he prescribed  Loratadine 10 mg after I talked to him about my symptoms about two month ago.

I took one pill each day and did not see any effect on reducing the symptoms. I had another visit to him a week ago and updated him on the results of taking this medication. He suggested a different antihistamine which I am going to start taking it soon. He has also suggested me to visit a psychiatric to see if the symptoms are results of a type of anxiety.

I told him I get the same symptoms when I have wet dreams and sometimes I don`t even notice that I had one but I get the symptoms and then I confirm that I had one. So how could I get anxious about it without knowing that I had ejaculation and get the symptoms after?

He said, in anyways, the psychiatric might help me with getting less of wet dreams and or coping with the symptoms.

I have not visited the psychiatric yet.

Please let me know what you think about going to the psychiatric and any comments or suggestions.


Thank you.   

[Animus]

We're making progress on the new site thread "Theoretical discussion of POIS". We have some excellent charts and illustrations to help visualize the data. I've just added a new pie-chart showing the composition of semen by gland- it's interesting. There is a section of the male anatomy showing the pathway of semen, and many other facts there as well.

[Omen 30]

can somebody tell me how long does the effects of pois stay after an O?

[Omen 30]

today is the 9 th day but i am still not totally out of it...

[Omen 30]

i wish i am born again without this horrible disease...i have suffered so much in my life..i wish i can undo all that i have done in the past...when i am totally out of it i am very good at whatever i do...but whats the use..out of 365 days in a year i think i am suffering for almost 250 days and the rest of the days are only good if am staying away from that f_&*&_g   O which empties my mind of all the wisdom and i am left with crap...

[Omen 30]

i think their are lots of sufferers like us in this world who are not even aware that they are suffering from something and feel that they just get tired after sex

[Vandemolen3]

can somebody tell me how long does the effects of pois stay after an O?

That's for everybody different. For me normally it takes 4 days. But if I have an O. when I am in POIS it could take more then a week. So since 2 years I have this plan not to have an O. in POIS. This means that you can have 2 O.'s in a week. It's difficult sometimes, but you want a normal life you have to.

[Vandemolen3]

i wish i am born again without this horrible disease...i have suffered so much in my life..i wish i can undo all that i have done in the past...when i am totally out of it i am very good at whatever i do...but whats the use..out of 365 days in a year i think i am suffering for almost 250 days and the rest of the days are only good if am staying away from that f_&*&_g   O which empties my mind of all the wisdom and i am left with crap...

We all have that feeling. But that's just the way it is. There are children with cancer, people who are disabled..... and we have POIS. It's a terrible diseasse, but we can be ok without an O. There are people who are feeling terrible all day.
Just hang on there. 2011 could be the year of POIS. We are making great progress.

[horizon]

OK,
My Garlic review:
 
Raw Garlic cloves                                TICK- Smelly but work
"Morrisons" Odourless Garlic Pills-             X dont work
"Hollands and Barretts" Garlic Oil Pills 5000mg TICK Smelly but they work!!
Some instant POIS relief, this is the first supplement I personally have found to do this (Fenugreek wasnt as good).

...sorry, you cannot view external links. To see them, please REGISTER or LOGIN

I suspect the Morrison Odourless Garlic pills didnt have Allicin in it (but I am not sure). So I therefore suspect it is Allicin which is reliefing my POIS. It seems to be the odour part which is doing it but I will have to investigate this more.

...sorry, you cannot view external links. To see them, please REGISTER or LOGIN
From ...sorry, you cannot view external links. To see them, please REGISTER or LOGIN
What's in Garlic that Makes it a Powerful Natural Medicine?
It is used to treat skin fungus infections. Others use it to alleviate toothache. Ever-present in the kitchen, garlic has always likewise been regarded as a powerful natural medicine. And being a species of the onion family, it sounds perfectly right to say, "A clove of garlic a day keeps the doctor away."

Well, you really don't need to consume an entire fresh clove each day to avoid taking that unwanted trip to your local medical center. Various scientific studies concluded that consuming even just half a clove of garlic daily may significantly lessen the risk of a number of health-related problems. Often it makes us wonder what's really in garlic that makes it such a potent cure for many diseases.

Garlic contains numerous enzymes, a number of sulfur compounds, and one particular mineral that explain its medicinal potency. The peculiar smell that garlic gives off when it is minced or masticated is caused by allicin, a pungent compound that is the major reason for the healing properties that garlic possesses. Another sulfur compound - S-allyl-cystein (a derivative of allicin) - is known to guard against certain types of cancer, particularly colon cancer. On the other hand, garlic produces an enzyme called glutathione peroxidase which helps in neutralizing harmful carcinogens. Garlic also contains selenium. This trace mineral is known to help defend body cells from damage that may lead to cancer.

When ranged against penicillin, garlic may only be about 1 percent as effectual in destroying many of the microorganisms that are known to cause diseases. However, garlic does operate against a wide range of viruses and bacteria - even some that penicillin can't kill. In some studies, it was proven that garlic can hold in check the development of the bacterium Helicobacter pylori which is a known cause of stomach ulcer.

Most of the tests conducted on garlic point to the undeniable power of garlic in lowering the levels of cholesterol. In these studies, garlic manifested its ability to lower the levels of triglycerides - the blood fats considered as a risk factor for heart malady. Indications from the same studies imply that garlic can lessen the tendency of the blood to coagulate. In this way, garlic helps fend off heart attacks.

For centuries, garlic has been an important part in cooking and an essential ingredient in many food preparations. But it is believed that the many health benefits that garlic can provide may be best obtained when it is consumed in its raw state. For people who dislike the taste and smell of garlic but might want to avail themselves of its many health benefits, consider taking supplements. An ideal brand is one that guarantees the provision of approximately 5,000 micrograms of allicin.

HOW DO PEOPLE COMPARE GARLIC ODOUR TABS V. ODOURLESS GARLIC TABS?
question put on the poll center!

[Omen 30]

can somebody tell me how long does the effects of pois stay after an O?

That's for everybody different. For me normally it takes 4 days. But if I have an O. when I am in POIS it could take more then a week. So since 2 years I have this plan not to have an O. in POIS. This means that you can have 2 O.'s in a week. It's difficult sometimes, but you want a normal life you have to.

ya i think its true this time i had 3 Os in the same night and i am still suffering...its the 9 th day today....i think having multiple Os worsens pois...

[Omen 30]

when you have only one O at a time then the recovery time is fast....thank you vandemolen3 for clearing my doubt

[Omen 30]

i have noted one more thing that my eye flickers when i am in pois....

[daveman]

He said, in anyways, the psychiatric might help me with getting less of wet dreams and or coping with the symptoms.

I have not visited the psychiatric yet.

Please let me know what you think about going to the psychiatric and any comments or suggestions.


Thank you.   

Stefanie at NORD, is sympathetic to the type pf reactions that we receive from doctors, and is also helpful in understanding how the system works.

Unfortunately it's a system that justifies to a great extent the doctors' behaviour, under a cloak of "ethics" and the requirement to document their decisions for each action they take.

BASICALLY, they use their descretion, and obviously, as happens with all rare disorders, when they don't understand the problem, they don't (can't?) go out on a limb. But the normal procedure is to refer you to someone who knows more about the potential problem.

If they are so naive as to believe that it's a psychological problems, there's not muchmore they can do.

You could however, TRY to convince him that it could help immensely if they could refer you to a immunologist or neurohormonal speicalist or something OTHER than psychiatrist.

As far as going to the psychiatrist yourself, don't know, it's possible he could help you with handling your symptoms, or reducing NEs, but his intention will probably be "other".

Try to see if you can squeeze out a better referal, to someone more pertinent. It's obvious this guy doesn't understand much beyond your every day general practice.

 

[daveman]

when you have only one O at a time then the recovery time is fast....thank you vandemolen3 for clearing my doubt

There's also a longer term tendency for it to be cummulative.

Some of my sessions only last 4 days, so I can sometimes do it after that. But I find that one or two sessions can be shorter, usually the first the shortest. But if I "O" as soon as I'm better, the third is quite bad and lasts 2 wks or more. But if I stretch out to about 9 days, that my symptoms only last on the average about a 5 to 7 days. And each session is more or less the same, without some shorter and then a doozie.

As Van says, we are all different. Perhaps one can do it onece every 4 days consistently, and another only every 9 days. But if we try to squeeze in more, it will come back to bit us.

So if you find that you can do it twicw per week, but on about the third week you have a real heavy one, perhaps it's better to back off to one every 5 days. This is good because it can give you a couple of days of sanity between sessions, and you don't get a bad session jumpingin there to wreak havoc.




 

[Omen 30]

when you have only one O at a time then the recovery time is fast....thank you vandemolen3 for clearing my doubt

There's also a longer term tendency for it to be cummulative.

Some of my sessions only last 4 days, so I can sometimes do it after that. But I find that one or two sessions can be shorter, usually the first the shortest. But if I "O" as soon as I'm better, the third is quite bad and lasts 2 wks or more. But if I stretch out to about 9 days, that my symptoms only last on the average about a 5 to 7 days. And each session is more or less the same, without some shorter and then a doozie.

As Van says, we are all different. Perhaps one can do it onece every 4 days consistently, and another only every 9 days. But if we try to squeeze in more, it will come back to bit us.

So if you find that you can do it twicw per week, but on about the third week you have a real heavy one, perhaps it's better to back off to one every 5 days. This is good because it can give you a couple of days of sanity between sessions, and you don't get a bad session jumpingin there to wreak havoc.




 

this time i think i have overdone it cause its the 9th day today and still its not totally recovered....and this time my i have a new symptom..my right eye flickers all the time... and i fell so stressed..am planning to go for a single O tonight..i think it will solve the problem..and i will recover fully in the normal time that is around 4-5days...

[Omen 30]

i hate interacting with anybody when i am suffering from pois...and i tend to be home all the time though my family members dont like me sitting home but i cant tell them what i am suffering through...

[daveman]

Hey brave souls! []

Rock27 and Martin88 both had problems on the international donations page at N O R D over the weekend, even though "N O R D  IT" had indicated that it was tested and working.

Demo and I have about 40 EMails each back and forth with people at N O R D, from the site programmer all the way up to the CEO. At 10:01, we had set a limit of 10:00, we received a message that the system was now operational.

Stefanie is sick at home (over this I might add). Didn't get to sleep until about 05:30 AM!
Demo had to go take a walk to "settle down", so meantime I send this note!

Please, any more problems, (let's hope not) report them immediately via PM please. Let's hope that this time it's true and the system is functional.

[rock27]

sometimes I don`t even notice that I had one <wet dream> but I get the symptoms and then I confirm that I had one.

This happens to me quite a lot. If you stay awake you can feel the pressure building up and then the release of the pressure. There is no (clear) semen release.

[Vandemolen3]

this time i think i have overdone it cause its the 9th day today and still its not totally recovered....and this time my i have a new symptom..my right flickers all the time... and i fell so stressed..am planning to go for a single O tonight..i think it will solve the problem..and i will recover fully in the normal time that is around 4-5days...

Eyes that flicker could be caused by stress. If I were you: no O. First you have to recover. A few days ago I showed a picture what sperm can do to a POIS-patient. You can see a red rash and nodules. Can you imagine what happens inside the body with all that sperm? And because your body thinks it's something bad your immune system works and you get very tired.

And about not wanting to talk to anybody: there are more people who have this. Maybe on day 1 it's better not to have a lot of contact, but on day 2 you have to socialize.

[demografx]

As soon as the international way of donation is efficient, I want to start with a 100$ donation and then see how the 33 500 $ are reached to put more money in the bank 

Habibou, thank you!!

[Animus]

this time i think i have overdone it cause its the 9th day today and still its not totally recovered....and this time my i have a new symptom..my right flickers all the time... and i fell so stressed..am planning to go for a single O tonight..i think it will solve the problem..and i will recover fully in the normal time that is around 4-5days...

Eyes that flicker could be caused by stress. If I were you: no O. First you have to recover. A few days ago I showed a picture what sperm can do to a POIS-patient. You can see a red rash and nodules. Can you imagine what happens inside the body with all that sperm? And because your body thinks it's something bad your immune system works and you get very tired.

And about not wanting to talk to anybody: there are more people who have this. Maybe on day 1 it's better not to have a lot of contact, but on day 2 you have to socialize.

Hi Vandemolen,
Can you please post that photo to the Theoretical discussion thread on the new forum? It's a very interesting image, and we're trying to collect these kinds of images in one place for an eventual "wiki". thanks, Animus

[daveman]

Just a note on the international donation facility at NORD!

Well I have to say, they know who we are!! This facility was new, and had a few last kinks, although more than anything it was erring on the safe side. But all's well now, they say.

There should be no more problems, but IF there are, any error would be tagged with a special error log code, which helps them follow up. Should you have problems, report that number to the webmaster and they will get you straightened away. Follow up with a PM to us.

I should be posting a new total tomorrow.