[daveman]

I went to my local urologist as part of my first step towards getting an anwser to my P.O.I.S and after sitting with him and discussing my problems, he told me he had come across it in the past and had studied some aspects of it and told me about Immune Privileges. Essentially there are some parts of the body that are protected by a barrier so the immune system can not create an auto immune reaction can not harm them. He told me, he believes in the case of POIS the testicles are lacking this barrier. http://en.wikipedia.org/wiki/Immune_privilege#Testes  There is a website with more information. Check the "testes" portion of the website and please tell me your thoughts and ideas

This is a very encouraging post. Itīs so good to see open medical professionals who are willing to learn and really help their patientes.

Thanks.

Tell your doctor there are hundreds of sufferers on this forum alone. We have front page exposure on Google with ove a million page views. If there is any way we can help HIM, that he let us know, bringing him clients, or providing more information or just giving him some publicity!

[CertainlyPOIS]

I went to my local urologist as part of my first step towards getting an anwser to my P.O.I.S and after sitting with him and discussing my problems, he told me he had come across it in the past and had studied some aspects of it and told me about Immune Privileges. Essentially there are some parts of the body that are protected by a barrier so the immune system can not create an auto immune reaction can not harm them. He told me, he believes in the case of POIS the testicles are lacking this barrier. http://en.wikipedia.org/wiki/Immune_privilege#Testes  There is a website with more information. Check the "testes" portion of the website and please tell me your thoughts and ideas

Intersting that you found a doctor that has heard of pois and somewhat agrees with dr waldinger

so have you guys decided on  a plan to help you.

I dont think it is the barrier messed up because pois dosnt start for most untill ejaculation. Ejaculation is when it leaves the barrier. in wikipedia it says that they believe the body uses more than just the barrier to keep sperm from creating immune reactions.
may be one of those mechanisim is also suppose to stop it when it leaves testicles and touch urethra, that mechanism might be what is broken.

Is he going to check if there something wrong with your barrier is that even possible
it will be cool check if the immune complex of the 'area' is in intact. 

[demografx]

Anyone who wants Stefanie's attachment, PM me with your email. Daveman, many thanks for having placed this in our Collaborators' Database!

Hi, Demo:

I don't know if the group already knows about the following researcher:

Mitchell Ho, Ph.D
Head, Antibody Therapy Unit
Laboratory of Molecular Biology
National Cancer Institute (Don't let that frighten you--POIS not cancer. This is about his immunotherapy background.)
Building 37, Room 5002C
37 Convent Drive, MSC 4264
Bethesda, MD 20892-4264
Phone: 301-451-8727
Email: homi@mail.nih.gov

I've attached a post from him that was on a website called, "Mad Scientists," (sound a little familiar?).  I yellow-highlighted the parts that I found significant. He's responding to a question that was posed (not POISED!) about auto-immunity to semen. He states that there is a potential to develop semen autoimmunity after vasectomies--that the "plumbing" (my word) should be a closed system so that semen does not mix with the blood -- but that some men who have had vasectomies have developed autoimmune disorders (because the system apparently left an excape hatch for semen).  I believe he was referring specifically to the development of MS symptoms here, and possibly diabetes (both autoimmune disorders).

I know that the POIS group is already aware of the potential for a semen autoimmune response after a vasectomy has been performed.  However, do you know specifically about Dr. Ho?  He might be helpful in tracking down a semen autoimmunity researcher who is open-minded enough to consider POIS.

I'm considering contacting him to find out if he knows anyone in the US (or in the world--other than Dr. Waldinger) who is researching semen autoimmunity in general, and may be willing to test for it.

In fact, I will definitely contact him--and let you know if he responds-- negatively or positively--or not at all. 

There may be a physical "escape mechanism"--congenital perhaps--that allows semen to get into the bloodstream and wreak the havoc known as POIS.  I know that many of the men on this forum did not have vasectomies, yet have POIS, so this post is not  geared to only those of you who have had vasectomies.

FYI, Dr. Ho is described as a "PhD" student in the attachment at the time he wrote that post. (I think the year was 2000).  He is definitely not a student now, and is literally a lead scientist and a highly evolved researcher at the National Cancer Institute.  His focus at NCI is the immunology behind certain cancers and the potential for immunotherapy as a treatment.

Just to repeat--POIS has nothing to do with cancer.  It's Dr. Ho's immunology expertise, combined with the potential of immunotherapy as a treatment for POIS--and the fact that he actually believes (or, at least, believed) that autoimmunity to semen (not just sperm--semen!) does exist--that makes him a "person of interest." 

And he's in the US, making it much easier for some of us to contact him!

The only way to find out is to ask!


Sincerely,
 
Stefanie Putkowski, RN, BSN
Clinical Information Specialist
Research Program Administrator
National Organization for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968

Phone: 203.744.0100
Toll Free: 1-800-999-6673
Fax: 203.798.2291
email: rn@rarediseases.org
http://www.rarediseases.org


Join our online community
http://nord.clinicahealth.com/
 
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[demografx]

Prof. dr. Waldinger status

Some of the forum members/readers here have had difficulty in communicating with Dr. Waldinger, such as not getting a reply with his 2011 papers.

I spoke to him, and while he is very committed to POIS, he has many obligations that keep him extremely busy, such as teaching PhD's, medical responsibilities with hospital patients, writing/publishing papers in other areas of sexual medicine, conference presentations, and much more.

Keep in mind that his POIS funding is like ours: bootstrap. Which is another way of saying self-funded.

He will proceed with the POIS surveys, but that might take several months to get going

If you write to him asking for the 2011 research study papers and get no reply, PM me with your email and I will send it ASAP.

[CertainlyPOIS]

Am just curious when the other forum gets bigger and starts becoming more of the focus of attention, it is going to result in NSF traffic reducing which will result in NSF loosing its ranking in search engines.  i was wondering if there is a plan for that in the future.
I know one way is to index the new site in google and also find ways to broadcast the site around the internet and also volume helps.

I remeber it took three years before NSF went up to number 1/ number 2, we cant afford that with the new forum, if it is becomes the main focus.

[daveman]

Am just curious when the other forum gets bigger and starts becoming more of the focus of attention, it is going to result in NSF traffic reducing which will result in NSF loosing its ranking in search engines.  i was wondering if there is a plan for that in the future.
I know one way is to index the new site in google and also find ways to broadcast the site around the internet and also volume helps.

I remeber it took three years before NSF went up to number 1/ number 2, we cant afford that with the new forum, if it is becomes the main focus.

Yes, there has been a lot of attention given to this.

The new forum has it's own code, so it's possible to apply most if not all of the Search Engine Optimizations. This will allow a much faster penetration than NSF had. The NSF situation, although NSF itself has high traffic, was a difficult Search Engine (SE) exposure project for POIS. There was no way to highlight our input and we basically had to build the numbers and transactions, almost as though we were a normal page. Being able to apply SE Optimization (SEO) permits a 4:1 advantage +/-.

Cross referencing will also be important. We expect first of all, that NSF will be around for some time, although that may involve an accompaying change in focus for each.

Also our position took time to build, it also takes time to decay. Google statistics are managed as a fairly wide sliding window. This means even if it were to stop dead now, it would have a history for some time, although clearly diminishing. In the transition we would ideally send newbies found through Google to the new site.

And thirdly as you mention, we would require a mini-marketing campaign to get the new site up on as many boards and media outlets as possible. There must be a marketing expert around here somewhere. []

My estimate is that a transition should ideally take about a year. It could be shorter, but it would be better to aim for the year. With the SE enhancement, and in the event of poor results, paid advertising (really not too expensvie for our requirements), we can have the same or better exposure than we have now.

One other aspect is quite importatnt. We NEED a WWW domain and hosting. These two things will be necesary to implement coordinated union of existing resources and provide a consistent and more stable entity identification.

One year of hosting with domain name has a cost of about $190. We need a volunteer!! I just can't right now. I hope to be able to take the cost over in the next year.

Thanks for asking!

[demografx]

Am just curious when the other forum gets bigger and starts becoming more of the focus of attention, it is going to result in NSF traffic reducing which will result in NSF loosing its ranking in search engines.  i was wondering if there is a plan for that in the future.
I know one way is to index the new site in google and also find ways to broadcast the site around the internet and also volume helps.

I remeber it took three years before NSF went up to number 1/ number 2, we cant afford that with the new forum, if it is becomes the main focus.

CC, many thanks for bringing this up. It is a major area of interest as Daveman points out.

Daveman, thank you for assuring that in the transition we will not lose our ranking at Google.

Google is the lifeline for any newcomer. I'm certain that's how most of us got here.

[demografx]

[You have POIS?]See a shrink for your mental health!

Answer by  NickP

Thanks Nick. We're all crazy. We can close the forum now.
And yes I would like fries with that.

 [] [] []

[Willem]

Horizon asked me to post the location where I got my test done:

The test was done at the San Diego location of the Allergy and Asthma clinic:

http://www.allergyandasthma.com/

Test was performed by Dr. Greiner.  Super cool guy, but just not familiar with this condition.  I wish I'd been on this forum longer as I would have been better prepared. 

[daveman]

Horizon asked me to post the location where I got my test done:

The test was done at the San Diego location of the Allergy and Asthma clinic:

http://www.allergyandasthma.com/

Test was performed by Dr. Greiner.  Super cool guy, but just not familiar with this condition.  I wish I'd been on this forum longer as I would have been better prepared. 

Willem,
We also have a database here where we can find (and/or insert) medical collaborators in our area

[martin88]

As it was recently mentionned some people were not sure to have sperm... I think it's possible to see sperm with a microscope with a 40x objective and 400x magnification according to this link: http://www.fertilityformen.com/products_microscopes.php
Also there's a 80$ microscope kit to do several home sperm count and motility test:
http://www.fertilityformen.com/products_micra.php

After taking that stuff my pois symptoms have reduced by a good 60-70% and have not returned back to as they were. Anyone want to take a guess as to why this has happend?

It would be good to try some of the ingredients separately. 70% relief is great, hope it will continue.

Am just curious when the other forum gets bigger and starts becoming more of the focus of attention, it is going to result in NSF traffic reducing which will result in NSF loosing its ranking in search engines.  i was wondering if there is a plan for that in the future.
I know one way is to index the new site in google and also find ways to broadcast the site around the internet and also volume helps.
I remeber it took three years before NSF went up to number 1/ number 2, we cant afford that with the new forum, if it is becomes the main focus.

I think you bring up a very important point CC, there are already several new keywords present at the new forum, and not at NSF.
Because the new forum is not in Google, someone who will search for one of those keywords in Google won't find us!
For now it's not possible to advertise the new forum because there's no domain name,  the actual IP address can change if the host must be replaced.
After submitting the forum to Google it will take at least 6 months to one year  (or more) to appear in the top, if possible.

A domain name is 9$/year and can be linked to any IP address including the actual host. A good host with unlimited traffic and mysql database is 25$/year.
But still remains the problem with the categories not accepted by the majority!

[Nightingale]

Anyone who wants Stefanie's attachment, PM me with your email. Daveman, many thanks for having placed this in our Collaborators' Database!

Stephanie Putkowski

Stephanie is a great supporter of our cause, I am working with her on getting more contacts/testers/researchers interested.  This guy sounds cool, especially since Bethesda is not far from where I live.  The National Institutes of Health is there too.

I nor Mrs. Putkowski have found someone who can test for semen allergy in my area yet.  She is working on it!

[Nightingale]

Horizon asked me to post the location where I got my test done:

The test was done at the San Diego location of the Allergy and Asthma clinic:

http://www.allergyandasthma.com/

Test was performed by Dr. Greiner.  Super cool guy, but just not familiar with this condition.  I wish I'd been on this forum longer as I would have been better prepared. 

Was this done as to Waldinger's specs?  What was the result?

[demografx]

I think it's possible to see sperm with a microscope with a 40x objective and 400x magnification

No wonder I couldn't see them with my magnifying glass!

[Vincent M]

Just took my first 250 mg pill of Relora. I plan on taking one pill 3 times a day. I'll document any progress in a more detailed fashion at the other forum.

[daveman]

I think it's possible to see sperm with a microscope with a 40x objective and 400x magnification

No wonder I couldn't see them with my magnifying glass!

Really good idea Martin. A telescope like that  is cheap!

A sperm count is usually done by counting the number of sperm in a graduated area of the "slide", and multiplying it by a factor.

With a cheapy microsccope, I don't think it's possible to see the graduated area (is it?) and how would such a graduated area be created? Maybe with a carefully made tranparency put on top of the specimen. Then one would have to calculate the volume in the space below the "transpancy" and multiply by a factor to get count per/ml or whatever units they use.

But If we just want to know yes or no... obviously much easier.

Still would be fun to experiment, as long as it didn't mean POIS every time!

[demografx]

Interesting. Another POIS Forum at eHealth Forums
http://ehealthforum.com/health/post-orgasmic-illness-syndrome-t177210.html

[Animus]

Just a friendly reminder!:

The POIS episode on TLC (The Learning Channel in USA) is scheduled to air May 22nd- this month!!
10pm Eastern Standard. Set your calendars!

I haven't seen it yet, so I'll be seeing it for the first time too.

[daveman]

Just a friendly reminder!:

The POIS episode on TLC (The Learning Channel in USA) is scheduled to air May 22nd- this month!!
10pm Eastern Standard. Set your calendars!

I haven't seen it yet, so I'll be seeing it for the first time too.

I've got Discovery, National Geographic and History Channel. I suppose it's not on any of those. I dont' think I've seen it on Discovery for instance. There's a program called Tabu where they have "Different Lifestyles and practices". And it seems I've seen a program of "different sex" too, but I'm not sure it's the same, and in any case, it only comes on every once in a while.

[Willem]

Interesting. Another POIS Forum at eHealth Forums
http://ehealthforum.com/health/post-orgasmic-illness-syndrome-t177210.html

Yeah, I remember this epic battle...
When you see the stupidity and the sectarianism of mr W.  you are not surprised we had to wait until 2011 to understand Pois. And most of doctors i have met are like him...
"The Earth is flat until a Nobel Prize tells me that, no, it is round ..."

Too bad Wolf and CuredofPois haven't joined us over here to spice things up.   Way to go B_Jim for holding your own.  I myself just suffered in silence, but you fought the good fight.  For Mr. W, it's one thing not to know (like most Dr's I've visited), another to be strongly convicted in your ignorance.