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Messages - Stef

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1
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 07/10/2014 14:17:33 »
How do you think people, Professor Barry Komissaruk find the cause of this syndrome? I doubt that the psychologist can help us. I'm afraid I don't know how to help you. I am just becoming familiar with the POIS problem. Research is required to understand what causes it. I am doing research on it, but I do not have any answers yet. Barry R. Komisaruk, Ph.D.

Kima, I have been watching your fraudulent posts about Dr. Barry Komisaruk.
It is a criminal offense to publicly impersonate someone, and it is also a criminal offense to defame someone's reputation by making false, detrimental statements on his behalf.
I am letting you know that Dr. Komisaruk will be advised of your activities, should he wish to take action.  Further, I have just reported you to this forum's authorities.



2
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 18/10/2013 21:30:47 »
I am feeling better now, thank you, even though i am still a bit short of breath. Must have been an asthma attack because i still feel it and panic attacks don't last more than 15 minutes or so.

I am getting myself an immediate appointment for a asthma checkup, quite convinced now i suffered an asthma attack.

I googled asthma and sex and found that its quite common, even thinking about sex can cause an attack in some extreme cases, did not know it was like that. I might be on to something here.



Johanstefansson,

It's a relief to hear that you're feeling better!!

Definitely get an asthma evaluation ASAP!  Your general practitioner might be a good place to start.

If it's asthma, you'll need medication on hand that works immediately.

Best wishes and good luck to you!

Stef




3
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 18/10/2013 15:16:08 »
This morning i had a nocturnal emission and now one hour later i am so short of breath its making me panic. This is truly horrible!

Feels as if something is destryoing my lungs from inside! I really need help with this.

I cant tell if this was a panic attack or something more severe as asthma or heart failure, can someone else here give me something to go on, have you been diagnosed with asthma or heart problem etc?

Hello, johanstefansson,

I hope you're feeling much better by now!!

It's impossible for anyone here to know if the shortness of breath is caused by a panic attack or a physical problem. (A panic attack can feel even worse than a heart attack because of the extreme anxiety that accompanies it.)

You wrote your post at least two hours ago. If you're breathing is not 100% better by now -- go to the emergency room or local walk-in clinic. Even if it's a panic attack -- at least you'll get evaluated and treated.


Stef
 

4
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 22/09/2012 02:22:51 »
Hello All!

A $400 donation to the POIS fund was just received from a forum member.

On behalf of Daveman and Demo, I'm formally thanking the donor for that generous donation!!! Demo has given me his permission to do so.

(Demo used to thank every single donor profusely on this forum from the bottom of his heart -- and with great fanfare. No matter how much the donation was, Demo has always been thrilled by each donation.  He remembers when no one knew about POIS, and the idea of a POIS research grant fund was just a figment of the imagination.)

Additionally, I want to mention that one of you has donated $50 -- twice -- in the past one-two months.  Demo has mentioned it on poiscenter.com -- but I don't know if that donor has made it over to that forum yet. Please know that your donation has been greatly appreciated!

Having had a bit of back-and-forth email with this young man -- he is donating every thing possible!! He is to be applauded!

And to the automatic/monthly donors -- Demo and Daveman send many, many thanks! They know that their pushing and prodding is not in vain, and want to make sure that you know how appreciated those donations are. :-)

If some of you have not made it over to poiscenter.com -- it is worth your while to do so.  Once you get the hang of it -- it's a fabulous forum.  Everything is organized!!

So -- again, on behalf of Demo and Daveman -- thank you both for your recent donations!!!! 

I'm willing to bet that you'll have a scientific research grant started in 2013 -- that will be the ticket out of this POIS hell.

You guys are terrific! :-)

Stef

5
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 14/09/2012 03:13:40 »
Are there any legitimate Scientists on this with a venucular greater than the volume of a reptilian brain?


strange way to ask for help :)

I agree with you, B Daniel. Aden99's comments were strange and very sarcastic.

Aden99 -- perhaps you actually don't understand who your comrades are on this POIS site. Each person here has walked in your shoes.  Some have medical knowledge, but these are not professional scientists who are experts on POIS.

As a matter of fact -- there are no scientists who are experts on POIS -- yet.

The forum members here are your fellow POIS sufferers, struggling constantly with the same basic misery that you're struggling with.

You wrote --

"Are there any legitimate Scientists on this with a vernacular greater than the volume of a reptilian brain? 
Please read my previous thread and provide an assessment as opposed to the poor responses equivalent to that of a junior in High School."


Really -- those comments are uncalled for and just plain obnoxious. 

Perhaps you think that there really are POIS scientists on this site.

Unfortunately, the answer is "NO!"

It might help for you to visit poiscenter.com, where you can start a thread on a topic of interest to you.

But  there are no scientist there either -- just fellow POIS sufferers that know your pain and are doing their best to help themselves, while donating to the POIS research fund at NORD.  THAT is where you'll find the scientist -- through the research grant.

Please hold off (this goes for everyone) on snide, cutting remarks.  You men don't need this!  You need to support each other, while getting your first scientific POIS  grant started.

Aden99 - try going over to poiscenter.com -- at least you'll be able to put your theories into one thread, where others can offer their opinions and perhaps offer some help.

But keep in mind -- there are no POIS scientists over there either.  Expect honest respect and commentary.  The scientists will eventually be found through your research grant.

With all the misery that most of you have gone through, the last thing you need is a kick in the stomach from a fellow POIS sufferer.

Stef


6
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 13/09/2012 17:09:15 »
Hi All!

This is just an FYI for those of you who are making automatic, recurring donations to NORD's POIS research grant fund.

If you're credit card expires, and you want to continue with your automatic donations, please re-register via our online donation page -- https://rarediseases.org/about/support/research-donations/fg_base_view_p3.

We ran into this situation with a recurrent donor whose card expired at the end of August.

It's very easy to fix by simply re-registering with your new card. If you have any questions or concerns, please feel free to send a PM or email me directly at NORD -- rn@rarediseases.org

Best wishes to everyone!

Stef

7
Hello All!

(This message is also posted at poiscenter.com.)

I had the honor this past July to travel to New Hampshire -- ~ five hours from my home town -- to meet a young woman with an undiagnosed rare disorder.  My reason for traveling all that distance (five hours, one way) was to meet this young woman, coincidentally also named "Stephanie," who had held a fund raiser at her local church. She managed to raise $4,300 in one night!

She'd gone on line, read about NORD, and decided that those funds would go to NORD.  So, we have set up a special fund with her name on it, which will be used to raise awareness through various educational methods about the issue of undiagnosed diseases. Our target audience will be both physicians and non-medical people.  She deeply wanted to meet a NORD representative in person so that she could hand over the check for the fund -- and I was the truly lucky NORD staff member to fulfill this mission.

Since that visit, more donations have come in, in her honor. Her fund is now nearly $6,000.

Stephanie has seen countless specialists --  and yes, when this all began she was told that it was "obviously psychiatric."

That was 10 years ago, when she was 13 years old and the symptoms began. Her parents have spared nothing in trying to get a diagnosis for their daughter -- but to date they have come up empty. Her condition is now at the point where hospice has been brought in.  Obviously, the cause of her illness was not pschiatric.

In my opinion, POIS falls under the term, "undiagnosed disease."  Until there's research that determines the biomarkers, gene, protein, hormone, urological abnormality, or whatever it is that causes POIS --  POIS will continue to be one of the many miserable undiagnosed rare disorders.

My reason for mentioning this young woman's story here is some very simple, yet very profound words from her.  When I asked her how she did what she did, how she was able to put her severely diminishing energy into that fund raiser, her response was -- word for word --

"Ask yourself, what do you want -- and what do you want to do to help others? Then do it!"

I ask that you all think in the same terms -- What do you want?  What do you want to do to help your fellow POIS sufferers.  Then do it!  Do what it takes to reach your research fund goal!  Find the cause of and the treatment for POIS!

If you'd like to read Stephanie's full story (it's not long), you can view it on NORD's website at --
http://rarediseases.org/patients-and-families/patient-stories/.

Stef

8
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 03/09/2012 04:47:05 »
Hi All!

A donation of $100 was made to the POIS research grant fund today.

But this is not about the donor -- or the amount of the donation.

This is about Daveman.

It is clearly stated that the donation was made in Daveman's honor -- on behalf of his efforts to help another human being.

Daveman is using his amazing ENGINEERING/SCIENTIFIC skills to help someone in the US who is suffering from a dreadful rare disorder.

Demo once described Daveman as an "architectural genius" --  Demo could not have used better descriptive words. Daveman is undertaking this very complex project essentially for free, knowing that the family has exhausted their bank account. He has already put a great deal of effort into this project (despite working very long hours during the week, being the head of a large household, and doing his best to keep poiscenter.com running smoothly).

Most of you likely see Daveman as a no-nonsense, intelligent, often serious, sometimes very funny, computer-savvy individual.  And you've also likely noticed his stalwart dedication to raising funds for POIS research.

What may not always come through on the forum posts, but which I've recently had the privilege to witness, is Daveman's amazing generosity of spirit -- the greatest attribute that anyone can have!!

He heard about a woman in the US who is struggling severely from a very rare condition, and is hoping that his engineering knowledge (my words here -- "unique engineering knowledge") -- might be able to help her climb out of some of the hell she's been living in.  He's now in the process of putting a very complex engineering project into action on her behalf. He's given her and her husband some realistic hope, where there was formerly only darkness and despair.

Daveman just very well may be able to do for her what various physicians and physical therapy specialists have not been able to do!

But even if Daveman's efforts don't ultimately help this woman, he will have shown that human kindness is very much alive and well, and that we are all part of the human family -- no matter how different our individual lives are and how far apart on this planet we live from each other.

So -- to reiterate -- this donation was made in honor of Daveman and his incredible generosity as a human being.

I'm guessing that he'll be very embarrassed to read this post, which I've also posted on poiscenter.com. I just could not let this this wonderful act of humanity -- by the creator of that wonderful forum and someone who knows all too well the misery of POIS -- pass without acknowledgement.


Stef

9
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 20/08/2012 22:54:25 »
Demografx, the previous and dedicated moderator of the NSF POIS thread, posted the following on poiscenter.com, just a short while ago --

"Today, poiscenter.com appears in The Wall Street Journal."
--

http://www.marketwatch.com/story/poiscentercom-announces-fundraising-effort-to-combat-rare-severely-debilitating-sexual-disorder-2012-08-20

Daveman and Demografx are an AMAZING team!!!!!  The WSJ is only one media outlet that's capturing the story. :-)

Stef

10
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 20/08/2012 22:06:22 »
The medical field does not appear to be aware of Post Orgasmic Illness Syndrome(POIS).  Is it possible that is is some sort of Psychological reaction?  Thanks for comments.  Joe L. Ogan

Hi Joe L. Ogan,

You're actually correct about the medical field's POIS-ignorance. They're barely aware of POIS, in the same way that most of them are unaware of the almost 7,000 documented rare disorders. (POIS is a documented rare disorder, listed on both the NIH Office of Rare Disease Research list AND on Orphanet's list, which is the European counterpart.)

However, many researchers DO know about POIS -- through NORD (rarediseases.org) and through the publicity brought about by some very brave, wonderful POIS forum members. 

It's absolutely not psychiatric in origin -- but I can understand why you asked the question. POIS causes such complete misery -- isolation, inflammatory-type physical pain, overwhelming fatigue, foggy thinking --> these are only some of the symptoms, which can last for two weeks or even longer. Many POIS-sufferers are unable to continue with their jobs or their education.

I feel that your question was asked in a most respectful tone, so wish to thank you for your interest. It's an awful, life-altering rare disorder that is crying out for research funds.

These men are getting there!! Despite the intense need for privacy, they have a very active research fund for POIS at NORD. https://www.rarediseases.org/about/support/research-donations/fg_base_view_p3

Stef

11
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 08/08/2012 21:10:37 »
Once again, hello!

I've just been advised that the Indiegogo campaign is online now!!

Please go to www.indiegogo.com/research-for-POIS and check it out.  There are major ways that you can participate and make this campaign really successful. 

Daveman at poiscenter.com is the Team Leader if you have questions.

I'm wishing you all the best of luck with this fund raiser for your POIS research grant!

Stef







12
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 08/08/2012 00:58:44 »
Hello All!

I haven't posted here in quite a while, but wanted to mention something that I hope you'll find encouraging regarding the NORD POIS research fund.  It occurred to me after receiving a question about the fund from an NSF forum member.

Your fund is well over $10,000 -- and very active.

I know that there was quite a bit of concern -- especially at first -- that your fund money could be moved to another fund if your goal wasn't met in a certain time. This is because our guidelines, posted on our website, state how and when funds are sometimes transferred -- something that we never, ever want to do -- and rarely have done (I mean RARELY!!) in the seven years that I've been administering the grant program.

We know that money donated to NORD for scientific research -- donated by individuals and/or groups for a particular rare disease -- is not just money.

Those donations represent  hope...and more importantly -- a real chance for a cure!

NORD's research grant program is not, and never will be, a lucrative program for NORD.  It was never meant to be a profit-maker, and was borne directly out of the desperation that people with rare disorders realistically feel.  The research has to begin with patient's donations -- it's the sad reality.

But the outcomes can -- -- and frequently have been -- WONDERFUL!! :-)
 
Our policy also states that the transfer of money is up to the discretion of NORD, which simply means that if there is interest expressed -- not even donations made -- genuine interest via emails or phone calls, inquiring about a particular fund -- we will not touch that fund.

Absolutely -- without question -- your POIS scientific research fund at NORD is 100% safe and sound.  Once a fund reaches $10,000 -- there is no way, whatsoever, that the funds will EVER be moved. You heard it here! :-)

That's A LOT OF MONEY for a beginning seed grant fund!!!!  If those of you who have pledged funds could meet those pledges -- you'd have an AMAZING research fund --> your first ever, scientifically sound and meaningful POIS research!

The minimum amount to post your grant (in March, 2013) is $33,500. You men (and any women who read this forum) would be crazy not to go for this!!!

In addition, the Indiegogo campaign to raise research funds for your NORD grant is just about ready to roll.  It will need your involvement! You'll be able to tell the world about this horrendous disorder, while raising money for solid, scientific research -- your ticket out of this nightmare.

And you may very well be saving the lives of others with POIS who happen onto the upcoming Indigogo POIS campaign -- they will find light and encouragement, instead of darkness and hopelessness.

You can read more about the POIS Indiegogo campaign at http://poiscenter.com/forums/index.php?topic=454.0 and  http://poiscenter.com/forums/index.php?topic=489.0.  It will likely be launched some time in the next two weeks -- so please do keep checking on it at those links.

EACH OF YOU CAN PLAY A VERY IMPORTANT ROLE IN THAT CAMPAIGN -- DON'T DOUBT IT FOR ONE MOMENT!

Wishing everyone the best -- and keep the faith!!

Stef




13
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 16/07/2012 02:46:49 »
Hi, Desperate Man, Kurtosis, Lauracostis, and All,

The blood test for Lyme disease is very inaccurate! It doesn't test for the bacteria that causes Lyme disease; rather, it tests for antibodies to the bacteria.

It can take two months or more for these antibodies to show up on a blood test, despite someone being actively infected with Lyme disease (caused by the bite of an infected deer tick, for those of you not familiar).

I live in Connecticut -- "hotbed" of Lyme disease. We have deer everywhere. Lyme, CT is where the disease became known as an emerging infectious disorder several years ago -- hence, the name, Lyme disease. 

My husband is very much an outdoorsman, and has had it three times! Fortunately, he had such a text-book case each time that he was treated (successfully!) without even having a blood test to confirm. Besides feeling miserable, he had the infamous bull's eye rash that can occur at or near the site of the tick bite -- he was lucky, as this rash is absolutely indicative. 
But many people just don't develop that rash.

The treatment is 21 days of the antibiotic, doxycycline.

He now uses proper precaution -- DEET when outdoors in his massive vegetable garden (which is adjacent to woods that are loaded with deer) and a self-check every night.

FYI, he had no idea that he'd been bitten by a tick during any of those three episodes of Lyme disease.  The tick only has to be embedded and engorged on you for 24 hours -- and they're tiny -- so it's very easy to miss them.

At any rate, the blood test is notoriously inaccurate.

It's a two part test -- if the first part, the ELISA test, is positive (a completely non-specific test, which can also be false positive or false negative for a variety of reasons), the lab will automatically perform the second part of the test -- the Western blot. That shows the number of IgG and IgM components that are activated. Based on history and symptoms, Lyme disease can be a suspected diagnosis when there are enough elevations ("bands") of the IgG and IgM antibody levels in the second part of the test.

But -- it's all INACCURATE -- and doctors know that.

If you think there's any chance of Lyme disease -- if you're at risk due to living in an area where deer are abundant, and/or if you have a dog or an outdoor cat (they can bring the ticks into the house -- and they can also become very ill with Lyme disease!) , your doctor should take your concern very seriously.  Untreated Lyme disease can have severe consequences.

Just want to emphasize -- Lyme disease and POIS have nothing to do with each other. 

Also, true chronic fatigue syndrome (there are definite criteria) has nothing to do with POIS.  Go to http://poiscenter.com/forums/index.php?action=search2 for specific information about chronic fatigue syndrome.

By the way, Desperate Man -- I have a suspicion that ticks are attracted to certain aspects of an individual's body chemistry, as are mosquitoes.  I've never had a tick bite, despite being outdoors in MY garden all summer.  Yet, the mosquitoes gravitate to me. If there is one mosquito -- it will find me and land!  However, they ignore my husband completely, unlike the ticks.

Kurtosis -- re: your statement about explaining to the physician about the inaccuracy of Lyme disease testing:
"Funny / tragic thing is, if you explained to your doctor, they'd probably just view it as greater evidence of hypochondria / anxiety."  --

I agree with you, just for the record.  Great point!  And pathetically sad, also.


Stef


14
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 13/07/2012 19:44:57 »
First I want to apologize that i will not donate this year to NORD to seek the cure. Today I decided to GET THE CURE. I started to search Urologists here in Poland which will help me in the realization of the plan:
-banking my semen
-doing a close-ended vasectomy (cost about 200 US Dollars and no problem in my country with doing this)
-removal of the seminal vescicles
-eventually TURP, but perhaps I wont need them if I will take finasteride

As you can see its a little bit modificated Animus Solution, because no one in Poland is willing to do a orchiectomy on demand and as Animus says it does not help a lot. The two other parts of the plan, I think I must do aborad: I hope I will find someone in Romania or Hungary (you can have there even Kidney transplants from a living donor).

Please help me and say what do you think about it?

Wow, that's a bold move Starsky!  Can you explain the thought process behind each procedure?

You'd have the procedure done one step at a time, too, so if just one of them "cures" you we'd be able to pinpoint which one, right?

Does insurance cover any of this?  How much does each part cost? 

What side effects are there for each procedure?  If your doctors think the risks are on the low side, then i'd be inclined to think favorably about it.  If we're talking strictly benefits here and not looking at the risks, I'd guess (completely unknowingly) that these 3 procedures would capture the problem. 

People have these procedures done for a whole variety of reasons... cancer, enlarged prostate, not wanting kids, etc.  I think this is as good a reason as any.  The only difference, and the only reason this is scary in my opinion, is that the cure isn't guaranteed. 

I'd actually be willing to donate towards helping you get this done.  The knowledge we'd gain from your procedures would be helpful to any future research and might teach us a great deal.

I will not do it in one operation because i dont want a POIS Overkill and want to let anybody to know which of those are really helping. EDS had a vasectomy (a closed as he remembers) and it does not helped so the whole Waldinger theory is ruined. I think Walldinger has a treatment but he has a false theory. And i dont want the SCIT, its too much pain and side effects and there are just ONE totally cured.
 Yes, i will sacrifice me in the name of the research. Besides i give so much for suplements and laboratory testing that i think i could have done this surgery so many times. But dont be affraid, the decision was not made because im depressed. I was thinking about this solution for more than a year. I wanted to say that i begin just with the preperation, because i want to know how much it costs and who can do it. With vasectomy (closed with a titanium clip, without cutting) there is no problem, the problem is with the vesiculectomy beacuse its more complicated and i must find a private clinic and a sympathetic doctor.

Starsky,

I received an e-news today at NORD regarding finasteride.  It came in the daily medical updates I receive from the medical-legal online journal, AboutLawsuits.com.
I'm about to post it on poiscenter.com, as a new thread in "General Alternative Causes and Treatments of POIS." 
http://poiscenter.com/forums/index.php?board=7.0
Please read it (and anyone else who is considering the use of finasteride -- please read!).

Stef

15
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 13/07/2012 02:07:40 »
This type of data would be perfect for Daveman's site -- I think it would get lost in between the many comments and theories that would pop up in between on NSF..

But it's an interesting and potentially helpful idea, Mer!

It's the biomarkers of POIS that need to be discovered. More than anything, I think that the answers lies in discovering those biomarkers.

Just as an aside, unless one has insurance, these blood tests would be very expensive.  I'm not even sure that insurance would pay for most of them.

Try to focus on the research, men.  Without it, there will be no cure.  No donation is too small.

Stef

16
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 23/06/2012 03:00:24 »
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

17
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 18/06/2012 19:30:38 »
Hi,  today I got my vitamin D level blood test.  My V D level is 2 whereas normal range is 30 to 70.  I am in severe deficient of Vit D. does Vit D has any link with auto immune diseases?
Nathan 123,

Your Vit D level is severely low!!

Do you know what specific Vit D test was performed? Was it the 25(OH)D test?  This is the most accurate test for Vit D deficiency, so please ask your doctor which test was done.

What does your doctor think is causing this serious deficiency, and what do you need to do to correct it?

Stef


18
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 15/06/2012 13:05:44 »
Hello, All --

(Both off-topic AND on-topic message here)

I've never mentioned this on the forum, although have spoken with Demo and Daveman about this.  They've given me the emotional support on this one.

This past December, ~ two weeks before Christmas, a young boy (14 y/o)in our town died after a life-long, terrible battle with a very rare disorder called epidermolysis bullosa.  It's one of the unimaginable conditions that no one could ever think up -- not even Stephen King.  It  involves severe external and internal blistering with terrible pain.  His name was EJ.

EJ had been my patient when I worked in home care -- he was 15 months old at the time.  This was one of those love-at-first-site situations -- one look, and I was in love.  He was so feisty, loved to laugh, always wanted to play -- despite the terrible physical pain of his genetic illness.

My family and his became very close friends.  My son used to babysit for him -- for free -- while in high school -- just to give his parents a break.  I babysat, my husband did also -- most people were afraid to because he was so fragile.
They were frequent visitors at our home for dinner, barbeques, etc (although EJ couldn't swallow food -- was fed via a stomach feeding tube).  But he was always ready to party -- no matter how awful he felt.

At age 13 y/o, EJ underwent a stem cell transplant -- a very new but very risky procedure for kids with this condition. The hope was that his condition would improve by at least 50% -- which would have been a MAJOR improvement.

You cannot imagine how grueling a stem cell (or bone marrow) transplant can be.  He suffered every possible side-effect of that transplant, and although his original condition actually disappeared, he remained critically ill from the transplant (received last rites three different times), and eventually died -- struggling until the bitter end.

My family makes regular donations to the organization that represents and supports these kids (some live to young adulthood).  We used to make those donations in honor of EJ, but now they are all in memory of EJ. In this case, part of the donations go to support of research, and part goes to helping the families of these children who are in dire financial crisis.

Even when my husband had been laid off from work -- nine whole months!! -- we continued to make our usual donations -- a little less in amount -- but regularly, nonetheless. (Fortunately, my husband found a very wonderful job after nine months of job-searching -- he's one of the lucky ones in this miserable economy.)
We didn't continue to donate because we are nice people.  We did so (and continue to do so) because money has a spiritual side to it -- it can be a force for good.

Demo and Daveman both know this because I've mentioned it to them in private emails several times -- for me, money is spiritual.  It pays your bills -- bringing you food, medicine, shelter, entertainment.   But it can also help, or even save, a single human being.

We don't tithe our money in the religious sense.  But after our monthly bills are paid, a portion is set aside -- literally -- in a checking account -- that is used strictly for causes that we believe in.  One is, obviously, research for EJ's disease.  Some has already gone to your POIS fund (applause/thanks, etc. absolutely not indicated or wanted here.)  We also directly give donations to the family of another child with EJ's disorder (we will probably never meet them -- they're in Minnesota, we're in CT). Despite having three healthy, biological children, they adopted this little boy.

His mom writes a blog about life with this child -- who she loves as much as she does her biological children.  He underwent that same stem cell transplant, was doing wonderfully, back home, eating, playing, getting into normal mischief! -- but now is suddenly very, very sick.  Something is wrong -- it's still a mystery -- and he's been in the ICU for the past three days.

I read her blog entry early this morning -- things are still looking very bad (but it is not hopeless -- he's slightly improved).

At the end of this mom's blog entry this morning child, she wrote the following --

"The ONLY way we will find a cure is through research. Please don't stop your research donations because Charlie may not make it."


Her statement immediately made me think of this forum, and of your own goal to find the cause, treatment -- and A CURE for POIS.

You can do it
-- even in small monthly, automatic donations.  You can save your lives -- and each other's -- this is the spiritual side of money.  Just a few dollars -- regularly donated -- will bring all of you your lives back. You won't miss those few dollars -- especially if they are made as a periodic donation. Even just $10 dollars -- donated regularly by everyone here -- will bring you your cure.

There are over 100 registered forum members here -- what prevents you from donating to your research fund????

Don't leave this responsibility to those who have already been making donations -- you are in this together -- and will all benefit.  But it won't happen unless you all make it happen. That is the reality of funding research for rare disorders.

Sorry for this long message -- but that mom's quote pertains to POIS sufferers -- and every other miserable disorder that is in need of research.

Stef   




 

19
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 09/06/2012 00:17:51 »
Dang!  I just set up a monthly recurring donation on the NORD site and got an error.  I will try again later. Waiting for the site administrators to check out the error.

Anyway, I've been a silent reader of this forum for the past year.  I was overjoyed to see that I wasn't the only one with this crazy illness.  To keep things short:

My age: 30 yrs
Start of POIS: Age 11 (19 years living with it, worsened as I got older)
Symptoms: Dermatitis, Acute back pain (like acid flowing through my spine), brain fog, severe irritability and anger, anxiety, severe fatigue,
                   digestive issues (tightness in the lower left side of my abdomen, like a knot), fingers and toes get really cold also.
Duration of symptoms: 3-4 weeks (no joke, I wish it only lasted a few days)

When I was 11 and O'ed the first time, I started getting dermatitis, and had to start taking claritine to reduce the itching all over my body.  This still happens everytime I have an O.
Two months ago, I abstained for 5 weeks (don't know how the heck I did it, especially with having my wife in bed every night).  I was determined to try it.  Then I couldn't hold it any longer, I was going out of my mind.  I took 250 mg of niacin and had sex while I was having a flush.  I felt like I was having sex on a bed full of broken glass, wasn't pleasant at all.  The next 2 days were the best days of my life, I was clear headed, had so much energy, I was very happy and just didn't know how to handle all that energy.  I'm too used to having low motivation to do anything.  Anyway, the symptoms started coming back again after the 2 amazing days, so I tried some more niacin, but it didn't work that time.  I'm now seeing a Urologist that has some knowledge of this illness.  He told me I have low testosterone levels (~202, normal is above 300 I think).  He also recommended I see an endocrinologist to check out my adrenal gland since I apparently have low cortisol levels.  He prescribed some Clomiphene (clomiphene citrate) which is supposed to raise my testosterone levels slowly, even though it clearly states that this medication is for women.  I will see him again in 6 weeks and will give an update if anything great comes out of this. I will try niacin again, but this time I'll give it 45 minutes AFTER the flush, like someone mentioned on this post. 
By the way, I live in Atlanta.  If anyone else lives in Atlanta, the Urologist's name is Dr Wayland Hsiao at the Emory University.  He's a really enthusiastic person.

Hello, Lapanique!

I will make sure that everything is straightened out regarding your donation -- and will get back to you personally about it next week.

In the meantime, thank you for providing the name of your urologist,
Dr Hsiao. He's got great credentials and will definitely be added to our POIS researcher list!!

Learning of docs who are open-minded and enthusiastic about POIS -- and NOT referring you for cognitive testing -- is refreshing, to say the least!

Stef


20
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 05/06/2012 16:26:15 »
Badgerstripe,

The blood tests that Dr. Goldmeier ordered are very basic tests.  So, it isn't surprising that nothing showed up that could potentially point to an immunological problem, a hormonal imbalance, or an inflammatory condition (these are just some examples).

He may be a wonderful psychiatrist -- I have no idea if he is or isn't -- and may even have some worthwhile techniques to offer that could help lower a bit of the stress that POIS induces. But his work-up from a medical standpoint sounds far from complete, especially in a condition as complicated (and, to date, mysterious) as POIS.

Is Dr. Goldmeier a psychiatrist? Does he have any other specialty?

I ask because I'm trying to understand his involvement with POIS and why is he referenced so frequently on this forum.  I've found him on the databases that we use, but could not determine why he's considered by some of the forum members as a POIS expert.  This is not to cast any aspersions -- I really don't know his background.  Input would be appreciated!

(The fact that his office lost your first set of blood tests is not a good sign, just FYI.)

I wish you the best of luck with the allergist that you'll be seeing.  However, keep in mind that POIS might not be an allergy (it might be, but nobody knows yet!).

It's all very frustrating, and I can only imagine what it's like to try to go through a POIS workup without any basic, scientific research having been undertaken.

Best wishes to you!

Stef   








21
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 03/06/2012 15:25:06 »
Hi all,

it seems that I am one of the 45 people where the study was performed on and did the skin test (positive result). As there was not much found on the internet a couple of years ago, I gave up searching and was waiting for Dr. Waldinger's publications. After seeing a tv programme on TLC yesterday on POIS, it made me search the internet again and found several new sites on the POIS topic - including this one! Thanks for all you efforts!

It also motivated me to stop waiting and contacting Dr. Waldinger again.

I would like to share this with you - as you all have shared your life with me!
For me it also matters when I have an O. After sleep, I mostly am recovered.
  • In the morning: I get more and more fatigue / ill / concentration problems / hurting eyes / headache / diffulculty finding words and it influences my social life. And have to sleep early to recover - next day mostly recovered.
  • In the afternoon: same as above, but lighter.
  • Ideal moment around 6-7 pm: not too much problems, but I fall asleep at 11pm, no matter what.
  • After 9: all the symptoms as above but a more serious headache and even more tired the next day. Need to sleep to recover again.
  • After 0:00: not a good idea to have sex & O. (but that's when the wife likes it the most)[\li]
Problems are getting worse over the years - now 45 and suffering for 20 or more years. I furthermore have light hay fever / allergic to mosquito bites / allergic to sun (skin).

And I almost forgot: i am hyper sensitive.

I don't have any solutions or relief found yet - but I am going to try Xyzal as I have it also for my hay fever - and some of the symptoms are the same.

I really hope 2012 is our year!

Wow!!

Hello, strikef1!

It's not my job to welcome people to this forum -- that's strictly Demografx's and Daveman's domain.

But -- WELCOME TO THE FORUM!!!!!

I've wondered where all of the 45 men who participated in Dr. Waldinger's study had gone. I think you are the one and only participant to grace this forum.

It sounds like you found your way here via the TLC channel's story about "Animus" (his user name), the first POIS forum member to go public, about 2-3 years ago.  He's the POIS PIONEER (my expression, nothing official!).  Animus was so brave to be the first to go public, and now others have followed (Observercenter and Hoping were just involved in a huge story for El Mundo, Spain's largest newspaper).

The ripple effect is alive and well! 2-3 years later, the TLC channel's story is still reaching out to people.

Your isolation because of POIS is now over. You've found your comrades. :-)

Stef

 


22
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 02/06/2012 20:06:07 »
For those of you who are interested in learning more about alternative/complementary medicine, you may find some reliable information at the National Center for Complementary and Alternative Medicine (NCCAM).  This is one of the centers of the US National Institutes for Health (NIH).

The link is http://nccam.nih.gov/

They don't push any agendas or attempt to convince people to do anything.  This is a serious, scientific research arm of NIH, and provides general information and reports of studies undertaken on the various types of alternative medicine.

Stef

23
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 30/05/2012 23:44:22 »
John21 and jferr (and everyone else!),

I was interested in your comments about prostatitis and a possible link to POIS.

There's been a lot of research over the past few years about autoimmune prostatitis, its causes, and how the permeability of the prostate tissue barrier can become disrupted from the resulting inflammation. 

There are several potential causes mentioned in these research papers, including (but not limited to) prior urologic surgery, prior bacterial infections, the mumps, certain environmental toxins -- even a family of genes is being suggested (the "claudins" -- a family of more than 25 genes). 

The research on this type of prostatitis -- the autoimmune type (not caused by bacterial infection) -- is abundant. There is also an abundance of autoimmune orchitis research (autoimmune inflammation of the testes).

You can all be certain that researchers who study these autoimmune disorders of the male urogenital tract are continuously being added to your ever-growing list of potential POIS researchers -- for that first research grant that you're on the way to funding.

That list also includes a host of other types of specialists (but not one psychiatrist is on that list!).

POIS is a mystery -- it's a condition that is wide-open for research!

The funding has to begin with you -- just as it does with all rare disease research. $10/month adds up amazingly! If enough of you could donate that amount -- via automatic monthly donations -- you'd meet your goal -- and probably go over the minimum!

There's an expression that goes something like this -- "Pray... but keep on rowing to shore!"

Research is your ticket out of POIS hell...so just keep rowing!!

Stef

 

Stef, thats very interesting, thanks for that. Can you tell me how it works when a reserach grant has the proper funding? How is it decided what path to take in research?

Hi John21,

Because POIS has so little basic scientific research (actually -- I've seen none), I have a sense that "What is POIS?" will be the direction of your first grant. It's absolutely not my decision, in any way, so this is only a hunch.

(As an aside, "POIS" may not be the correct name for this condition, as men have reported here that symptoms can occur without ejaculation, and can occur even during work-outs -- not related to sexual activity.  There is a lot to be learned!!!)

Your grant will be called "Post-Orgasmic Illness Syndrome," because that's how it is currently known. But just as a FYI, it is very standard for rare disorder names to change as research unfolds.

I know that this sounds like a very broad statement ("What is POIS?"), and may sound like it will take FOREVER to get the answers -- but that is not necessarily the case!!!  There have been some incredibly dramatic findings from first, very basic research grants that came from NORD's program.

It's a process that you men need to trust.  The absolute best will be done with your funds -- they will not be wasted in any way. There will be no shenanigans, no smoke and mirrors, and the award recipient(s) will be chosen based very strictly on the merit and potential of the study.

There's an entire page about the the research grant over at the SMF site -- http://poiscenter.com/forums/index.php?board=22.0.  Probably most of your questions are already addressed over there.
The link to the thread on that page that specifically describes the grant program is -- http://poiscenter.com/forums/index.php?topic=125.0

The most IMPORTANT thing that you should all know is this --> NORD's Medical Advisory Committee (MAC) -- the scientists who determine the award recipients -- are above board in every single way.  I wish that I had the proper words to describe the admiration that I have for them.  They do this service for NORD voluntarily -- they are not paid -- and are each full-time researchers and physicians with their own busy caseload of patients.  They are completely in keeping with NORD's mission to help find treatments and cures for rare disorders.

Also, generally-speaking, NORD posts it's grants ("RFPs" - Requests for Proposals) once/year in mid-March. The entire process is long -- it takes a good nine months. However, we have had occasions to undertake an extra grant cycle -- twice -- in the seven years that I've been doing this.  If a few funds meet their goals by July or August, and the groups/donors are anxious to get things moving -- we'll start a second cycle around August. 

We just completed (last week) a second grant cycle from 2011 -- from which I'm still recovering!!!!!

There's one last thing to mention that is completely specific to the POIS grant.  Since there is almost no formal POIS research published, our MAC will benefit from receiving input from the forum.  This won't sway them in any way -- the award will go to the best study. But -- it will serve to enlighten them about the symptoms of POIS, what has been helpful for some, what has been harmful, what some of the most miserable symptoms are, etc.  Daveman and Demo will put together a brief summary for our MAC when your fund becomes A GRANT.

I also want to state one thing about psychiatrists and your grant.  This will, without question, not be a study on the psychosexual aspects of POIS.  However, if an outstanding university-affiliated psychiatrist whose focus is  specific neurotransmitters, for example, or very specific neuro-imaging techniques that might pertain to POIS (just using examples here) appears in the databases that I use, they will be invited to apply.  I haven't put any focus on this yet, but will by the time the fund is ready.  There are some seriously REAL scientific researchers who are psychiatrists and I wouldn't want to leave them out of the mix.

But our MAC cannot be fooled -- so please try to trust the process.

Stef
 

24
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 30/05/2012 02:18:08 »
John21 and jferr (and everyone else!),

I was interested in your comments about prostatitis and a possible link to POIS.

There's been a lot of research over the past few years about autoimmune prostatitis, its causes, and how the permeability of the prostate tissue barrier can become disrupted from the resulting inflammation. 

There are several potential causes mentioned in these research papers, including (but not limited to) prior urologic surgery, prior bacterial infections, the mumps, certain environmental toxins -- even a family of genes is being suggested (the "claudins" -- a family of more than 25 genes). 

The research on this type of prostatitis -- the autoimmune type (not caused by bacterial infection) -- is abundant. There is also an abundance of autoimmune orchitis research (autoimmune inflammation of the testes).

You can all be certain that researchers who study these autoimmune disorders of the male urogenital tract are continuously being added to your ever-growing list of potential POIS researchers -- for that first research grant that you're on the way to funding.

That list also includes a host of other types of specialists (but not one psychiatrist is on that list!).

POIS is a mystery -- it's a condition that is wide-open for research!

The funding has to begin with you -- just as it does with all rare disease research. $10/month adds up amazingly! If enough of you could donate that amount -- via automatic monthly donations -- you'd meet your goal -- and probably go over the minimum!

There's an expression that goes something like this -- "Pray... but keep on rowing to shore!"

Research is your ticket out of POIS hell...so just keep rowing!!

Stef

 

25
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 27/05/2012 22:10:51 »
Nietzsche has words of comfort: "That which does not kill me makes me stronger."

The statement "That which does not kill me makes me stronger." is nonsensical,
e.g. a non-fatal brain injury which rendered someone into a vegetative state would not make them stronger.

BTW Nietzsche suffered from dementia and was rather keen on narcotics.
Anyone with a with chronic illness promoting the ideas of this demented junkie is shooting themselves in the foot ...


Quote from: Friedrich Nietzsche
The invalid is a parasite on society. In a certain state it is indecent to go on living. To vegetate on in cowardly dependence on physicians and medicaments after the meaning of life, the right to life, has been lost ought to entail the profound contempt of society.
http://thinkexist.com/quotation/the_invalid_is_a_parasite_on_society-in_a_certain/323161.html
 

Nietzsche was also speaking with self-loathing and contempt for his own dependent state. He said some sensible and clever things and some that were ridiculous and/or fascistic. If a lunatic makes a good point and it gives someone a useful perspective then that's seems fine to me.

Also, I'd dispute that a quotation needs to be logical, consistent and well-formed to be useful. When I read that quotation by Nietzsche I think about the possibility that my perspective has been changed in some beneficial way by suffering from POIS. I believe it has. I understand that a person's life can be interrupted or upset by something external that appears to resist every attempt to treat it and is not recognised by the medical community. That was a hard lesson to learn and it's given me many insights into the limitations of medical knowledge and sympathy for those I may have been too busy and too arrogant to care about.

A friend of mine is a psychologist and he makes a good argument that great human endeavour is driven by our reaction to trauma. He argues that any form of achievement (sport, intellectually, music etc.) represents a thousand battles (metaphorically) with the traumas stored in our primitive brains. So I can understand what Demo is getting at. He's done what he has in life in spite of POIS and is driven to help us on this forum because the trauma of the POIS experience drives him to improve things for others. If Nietzsche helps provide that perspective then so be it.



kurtosis, BEAUTIFUL reply. Expresses extremely well what we're exactly all about.

Thank you!



Kurtosis, you express yourself wonderfully!!!!  :-)


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