Free Flow Discussion about POIS

[Jon]

FornicationDENIED,

That is very interesting. You seem to know a good deal about the effects neurotransmitters and such.

I certainly hope that the damage isn't permanent. Its one thing to not be thinning sharply or correctly, but it definitely worries me to think that I may have lost cognitive potential that I cannot recover.

All I can say is that I'm 26 and I do not have the energy to do more than 1 or 2 activities all day. I find myself taking half of the day to fully wake up and afterwards I find myself nodding off. I've tried everything. I am at the point where I am just struggling to live everyday. I feel like I'm in a bad spot guys. I see everything declining more and more. I don't know what to do.

[demografx]

Jon, I felt like you, decades ago. I fought my way to here today, and now no more decades of waiting. As nordnurse says, "the answers to POIS are now around the corner", especially with our $31,000 grant that has already attracted some top flight world class medical researchers finally taking a hard, serious look at POIS!

Don't give up!

[Daveman]

Microsoft Outlook has missed roughly 50% of the posts since I set it up. If I start from about 6 hrs after I set it up and start reading at Daveman's last post in response to LAPOISSE about NSAIDs and then stop reading at my last post then it has delivered 7 out 13 total posts. Only slightly better than 50%.

On the other hand bloglines.com has delivered 100% of the posts in that particular time frame, but it missed posts earlier.

It could be that these reader set ups take more than a few days to start functioning properly, but I doubt that's the case.

WOW, I didn't think it was that much!! Hope I'm not missing too many SPAMs... (to delete and report) Don't forget, if  you see SPAMs, everybody, click the "report to moderator button" below the post.

I tried to register in bloglines.com, but every username that I put they said was taken. Something wrong, because it didn't matter WHAT I put!

[Stef]

Hey guys. I have not been on here in a while but I am in a tough spot right now.

I'm not new to POIS. I've had it since I was 16, I'm now 26. Long story short, One day at the moment of climax when I was 16 it felt like an engine shut off my in my head. It wasn't the regular feeling I would always get after orgasm, Instead I felt dull and unenergized. From there, I was never the same. Since that day that 'engine' has never been turned back on. I remember wondering why I no longer felt the natural high of life or sense of well being I had felt before. I then developed a POIS on top of that, But not a regular POIS. My POIS includes a 3-5 day recovery period, but unlike many I have recovered less and less overtime. In other words my symptoms are constant, and if I do have an orgasm my body will not replenish my health the way it did even last time. Essentially I recover less each time. If I have 2 orgasms in a day my body cannot handle it, All my symptoms will take a big dip and my whole body chemistry will be changed. It has been debilitating. I've had to hold off for months at a time, And even in doing this my constant symptoms have not disappeared. 6 years ago I thought it couldn't get worse, 3 Years ago I thought the same, And today I am in fear because my symptoms have taken over my life.

Initially my symptoms were many and familiar to this forum .. Cognitive included trouble thinking, alertness issues, slowed reactions, difficulty feeling emotions. Physically my symptoms started with hot flashes, fatigue, muscle tremors, weakness, poor libido, groin and low abdominal pain following orgasms, and sensitive eyes among others.

I had to withdraw from school and work for a couple of years. I got all sorts of testing, tons of bloodworm, MRIs, Cat Scans. I've been to all sorts of doctors.... neurologists, endocrinologists, psychiatrists, urologists, cognitive therapists. Tons of visits to the top hospitals in Massachusetts. Standing up to many doctors as they told me its all in my head, and explained myself to many more as my testing came up normal. The frustration repeatedly finding nothing conclusive cannot be explained.

Eventually I found this forum I'd say around 2 years ago and I am very thankful for it. I initially found mild relief with fenugreek and garlic, but I still couldn't function. I then found niacin and felt about 40% better after orgasm. After 8 years into my issue, fellow member Kurtosis suggested a treatment regimen that I found great relief with. He told me to take spirulina, chlorella, fish oil, and vitamin C. So I was taking niacin before orgasm then all these supplements immediately after orgasm and also in the coming days. At first I felt strong, my weakness disappeared, I could think straight, and even my grain pains disappeared. I almost felt high in that I could work all day and I was very assertive. It was like things that seemed unbearable before became pleasurable and I couldn't find enough to accomplish. This went on for months. After a few months I started noticing myself dipping back down with each orgasm little by little.

I have since continued to dip and my symptoms are worse than ever. It is very difficult for me to open my eyes during the day, my cognitive symptoms are almost like that of a schizophrenic. I have trouble speaking and I slur my words, Trouble picking up social stimuli, I cannot always control my facial expression or voice, my sleeping is off, my emotions are very mild, periods of standing blankness, and I have trouble thinking. Physically all my symptoms have returned plus I have digestion issues, weakness, and others. These days even if I'm abstaining I still feel like I'm getting worse.

I've recently had trouble dealing with these as simple as the elements. Sun, wind, rain, etc. are harder now for my body to deal with. I feel that I'm mentally losing my sense of urgency as it took me days to write this. I sometimes wonder if taking all those supplements directly after orgasm hurt me more than helped me. Basically, It feels like my core energy that at one time made these things healthy was sucked out of my during that first incident. It seems that over time my energy is getting lower and lower and I really fear for what might happen to me. I am on a steady decline and I don't know what will happen to me if I get much worse. I would appreciate any input as I have a lot of respect for people in this forum.

Best,

Jon.

Hi Jon,

I just read your post.

I wanted to mention an observation to you, not only to try to allay some of your fears, but because it really stood out for me while reading your post.

Despite the fact that your symptoms are very strong, that you've been feeling miserable and things seem to be getting worse, that you feel like you're on "a steady decline" and that it took you days to write the post -- your writing is absolutely clear!  There's no hint of rambling, off-kilter or illogical thinking. In fact, your writing is eloquent -- you expressed your thoughts beautifully!

Please try to remember this when you become really worried about this sense of a steady decline. You may be feeling worse over time (for now), but your post reflects someone with absolutely clear thinking! Clarity of thought and ability to express oneself the way you did in your post are signs that you are absolutely there and present.

It doesn't matter that it took you days to write that post (which was a very concise history!). Many people without POIS -- without any illness -- cannot express themselves nearly as well as you just did.

Remember what demo wrote -- he, too, felt like you do now.  I remember him mentioning that he had extreme fatigue -- this was a stand-out symptom if I recall correctly.  But he was eventually able to find some medication treatments that tremendously eased the symptoms of POIS.

You may not find those treatments on your own -- but research will do it for you.

At this point, it's inconsequential that the topnotch, excellent docs in Massachusetts found "nothing" to explain your symptoms.  They did not know what to look for.  

Broken record about to start playing...  No one knows what POIS is! There has been no serious, solid research yet.

In the meantime, please remember -- your thinking is clear -- 100% clear -- despite feeling awful. This agonizing sense of decline that you've described is temporary -- don't doubt it for a moment.

Stef  






 

[demografx]

Hey demo!
A quick update about my pursuit of endocrinologists. I contacted 15 "respected" and private ($$$$) endos.
Here's the result: 9 didn't even reply, 5 thought I was crazy and the last one was really interested in the whole thing.

He was really chilling and easygoing, I was his last patient and we talked for a couple of hours. I told him everything, about Waldinger, about the forum, about your successfull therapy. And then he said "THE Internet is a great invention" (he was quite old) when I told about the research grant.
He was willing to help but he made his point saying that going through TRT at my age (26) could make more damage than relief in the long run. Especially with this research that may give more answers in a year or two.
He basically told me to be to wait. "You waited 26 years now wait for one more and don't make stupid things in the meanwhile".

So I think I might listen to him.

poiseidon, yes, at age 26, TRT could conceivably mean HAVING NO CHILDREN if you do TRT.

At your age (and this close to NORD answers)...I am HAPPY that you are listening to this endocrinologist!

[demografx]

I changed my profile here @ POIScenter:

I  simply added the word "nearly" (see profile below, under each of my posts)...I'm *not* always 100% POIS-free with my treatment.

1. I am mostly retired, so I have FAR less daily stress than before.

I don't know how well I would do with POIS + daily occupational, work-people-related stress, as before.

2. I still cannot explain why I'm "POIS-free" sometimes, and at other times (especially stressful), some POIS (minor but still ugly POIS!) still comes back, even with my adding Levitra Rx + other meds to the mix, including controversial mood meds.

3. I am very grateful for the forum - and others - encouraging me strongly to see a [POIS-sympathetic] endocrinologist in 2008. The forum consensus at the time was that "POIS is a hormonal imbalance". So I followed. And got LUCKY!

[demografx]

[Posted by new forum member, "yasienhossam", representing medical researchers who sign this posted letter. Posted Letter addressed to Dr. Marcel Waldinger]

Dear Prof Waldinger,

It has given us great honor when the editors of F1000 Research had told us that you will be one of the reviewers of our paper but we were astonished when we read your response which  said that you refused  our work that was accepted (with reservation) by the other 3 referees.  We think and feel that it was not fair enough.
 Actually we respect your own opinion but we are surprised!; how it comes to reject a case report of POIS (the rare disease) and say that you encourage publication in that topic?!. Is it related to  what you think that; the idea of atopy may be a precipitating factor for POIS  is yours and not ours ?!.  We think that this is not true. This is because we discovered our case by the end of 2009 and at that time you have only one publication in 2002- in which you didn't refer at all to atopy. We have found that our patient is atopic and in addition to the cognitive  and body pains he feels post orgasmic; his atopy flares  up  eye irritation with severe body itching. By December 2009 and after preparing the report and before its publication we sent you 3 e-mails with about one week intervals,  by the full length paper to ask you your experience as the only reporter of this syndrome - at that time -  but sadly enough we didn't receive any reply.  Please, return back to your archive. Moreover;  in 2010; we shared the ISSM forum by this case report  also before you mention at all any relation of POIS to atopy -  you mentioned it only in your publication at 2011 -  and many of our colleagues who are ISSM members  shared by comments and discussion ; we remember that one of them was Prof. David Goldmeier. Please go back to the ISSM Forum 2010. This case report was presented  as a poster in the 20th World Congress for Sexual Health, held in June 12- 16, 2011, Glasgow, UK  , and published in its  proceedings . For the before mentioned reasons we think that; it is ours and not yours that; atopy may be a precipitating factor for POIS and we must ask about and check for it in any of POIS cases.
Our Dear Dr  Waldinger, in your reply one of the reasons for which you refused our case report -as you stated - is that we mentioned that; NSAIDs, tramadol and SSRIs may help and you didn't find any response to these drugs. We want to remind you that this is not our findings  but the references mentioned and our patient didn?t get any benefit from trying these drugs;  please you can read our case report again !.
What we feel very important and we want to discuss is the skin prick test as a diagnostic test for allergy. Do you think that it is a reliable one in this regard?  is it  enough to reach the final conclusion that POIS patients are allergic to their own semen and that this is the cause of POIS?. Basically; we know -  and it is scientifically proved -  that this test  has many false positive and negative results. Moreover; we as andrologists ; knew - and it is scientifically proved as well that; our semen is foreign for our body and our  immune system.  Immunologic tolerance to it  is not present as it formed only after our puberty where the immune system didn't identify it in utero. For this reason our God totally separated it from our immune system by what is well known now as the very competent Blood  Testis barrier that is formed by the highly efficient Sertoli Sertoli cell junctional complex.  It is not - as you mentioned on you tube - a hypothetical membrane. Only in certain known pathologic conditions this barrier may be broken. If occurred we form auto-antibodies against our semen. So; when we inject our own semen intradermaly we will react positively to it  as it is a foreign antigen for us. Please try to apply this very simple prick test for you and your assistants using your own semen; mostly you will get a positive reaction without having POIS. Moreover; if we suppose that;  allergy to the patient's  own semen is the cause of POIS; it was mandatory to measure serum and seminal plasma anti-sperm antibodies; IgA, IgG and IgM, to do immuno bead and MAR testing and to report on the patient's seminogram changes as in such cases ? if this is true -  POIS patients will  be mostly infertile as well. So; as you depended only upon the unreliable  skin prick test  and for the afore mentioned scientific facts,  we  - and we think that we will be shared by anyone who is interested in andrology -    think that; your conclusion is not right and we can't scientifically accept  that the cause of POIS is allergy to own semen.  
Dear Prof, we are surprised; how it comes that; only from two patients ? without placebo control ? wants us to accept that; hyposensitization using the patient's own semen is the treatment of POIS!.  Although your last two papers are published in a highly respectable journal we are sorry to say that; this is not right from the scientific facts mentioned above and they are only two patients. We think that; any benefit  if any is not more than placebo.
 
Thanks,   
Prof. Dr Abdalla attia & Dr  Hossam Yasien
Andrology Unit,
Faculty of Medicine,
Minoufiya University,
Egypt

 = = = = = = = = = = = = = = = = = = = = = = = = =

yasienhossam, thank you for your excellent questioning!

I hope Waldinger will respond.

Best regards,
Demo

ps - contact info

Prof. dr. Marcel D. Waldinger
dr.m.d.waldinger@gmail.com

[demografx]

Hey guys. I have not been on here in a while but I am in a tough spot right now.

I'm not new to POIS. I've had it since I was 16, I'm now 26. Long story short, One day at the moment of climax when I was 16 it felt like an engine shut off my in my head. It wasn't the regular feeling I would always get after orgasm, Instead I felt dull and unenergized. From there, I was never the same. Since that day that 'engine' has never been turned back on. I remember wondering why I no longer felt the natural high of life or sense of well being I had felt before. I then developed a POIS on top of that, But not a regular POIS. My POIS includes a 3-5 day recovery period, but unlike many I have recovered less and less overtime. In other words my symptoms are constant, and if I do have an orgasm my body will not replenish my health the way it did even last time. Essentially I recover less each time. If I have 2 orgasms in a day my body cannot handle it, All my symptoms will take a big dip and my whole body chemistry will be changed. It has been debilitating. I've had to hold off for months at a time, And even in doing this my constant symptoms have not disappeared. 6 years ago I thought it couldn't get worse, 3 Years ago I thought the same, And today I am in fear because my symptoms have taken over my life.

Initially my symptoms were many and familiar to this forum .. Cognitive included trouble thinking, alertness issues, slowed reactions, difficulty feeling emotions. Physically my symptoms started with hot flashes, fatigue, muscle tremors, weakness, poor libido, groin and low abdominal pain following orgasms, and sensitive eyes among others.

I had to withdraw from school and work for a couple of years. I got all sorts of testing, tons of bloodworm, MRIs, Cat Scans. I've been to all sorts of doctors.... neurologists, endocrinologists, psychiatrists, urologists, cognitive therapists. Tons of visits to the top hospitals in Massachusetts. Standing up to many doctors as they told me its all in my head, and explained myself to many more as my testing came up normal. The frustration repeatedly finding nothing conclusive cannot be explained.

Eventually I found this forum I'd say around 2 years ago and I am very thankful for it. I initially found mild relief with fenugreek and garlic, but I still couldn't function. I then found niacin and felt about 40% better after orgasm. After 8 years into my issue, fellow member Kurtosis suggested a treatment regimen that I found great relief with. He told me to take spirulina, chlorella, fish oil, and vitamin C. So I was taking niacin before orgasm then all these supplements immediately after orgasm and also in the coming days. At first I felt strong, my weakness disappeared, I could think straight, and even my grain pains disappeared. I almost felt high in that I could work all day and I was very assertive. It was like things that seemed unbearable before became pleasurable and I couldn't find enough to accomplish. This went on for months. After a few months I started noticing myself dipping back down with each orgasm little by little.

I have since continued to dip and my symptoms are worse than ever. It is very difficult for me to open my eyes during the day, my cognitive symptoms are almost like that of a schizophrenic. I have trouble speaking and I slur my words, Trouble picking up social stimuli, I cannot always control my facial expression or voice, my sleeping is off, my emotions are very mild, periods of standing blankness, and I have trouble thinking. Physically all my symptoms have returned plus I have digestion issues, weakness, and others. These days even if I'm abstaining I still feel like I'm getting worse.

I've recently had trouble dealing with these as simple as the elements. Sun, wind, rain, etc. are harder now for my body to deal with. I feel that I'm mentally losing my sense of urgency as it took me days to write this. I sometimes wonder if taking all those supplements directly after orgasm hurt me more than helped me. Basically, It feels like my core energy that at one time made these things healthy was sucked out of my during that first incident. It seems that over time my energy is getting lower and lower and I really fear for what might happen to me. I am on a steady decline and I don't know what will happen to me if I get much worse. I would appreciate any input as I have a lot of respect for people in this forum.

Best,

Jon.

Hi Jon,

I just read your post.

I wanted to mention an observation to you, not only to try to allay some of your fears, but because it really stood our for me while reading your post.

Despite the fact that your symptoms are very strong, that you've been feeling miserable and things seem to be getting worse, that you feel like you're on "a steady decline" and that it took you days to write the post -- your writing is absolutely clear!  There's no hint of rambling, off-kilter or illogical thinking. In fact, your writing is eloquent -- you expressed your thoughts beautifully!

Please try to remember this when you become really worried about this sense of a steady decline. You may be feeling worse over time (for now), but your post reflects someone with absolutely clear thinking! Clarity of thought and ability to express oneself the way you did in your post are signs that you are absolutely there and present.

It doesn't matter that it took you days to write that post (which was a very concise history!). Many people without POIS -- without any illness -- cannot express themselves nearly as well as you just did.

Remember what demo wrote -- he, too, felt like you do now.  I remember him mentioning that he had extreme fatigue -- this was a stand-out symptom if I recall correctly.  But he was eventually able to find some medication treatments that tremendously eased the symptoms of POIS.

You may not find those treatments on your own -- but research will do it for you.

At this point, it's inconsequential that the topnotch, excellent docs in Massachusetts found "nothing" to explain your symptoms.  They did not know what to look for. 

Broken record about to start playing...  No one knows what POIS is! There has been no serious, solid research yet.

In the meantime, please remember -- your thinking is clear -- 100% clear -- despite feeling awful. This agonizing sense of decline that you've described is temporary -- don't doubt it for a moment.

Stef   






 

Stef, you have brought such incredibly great Hope to this Forum.

THANK YOU!

[Stef]

[Posted by new forum member, "yasienhossam", representing medical researchers who sign this posted letter. Posted Letter addressed to Dr. Marcel Waldinger]

Dear Prof Waldinger,

It has given us great honor when the editors of F1000 Research had told us that you will be one of the reviewers of our paper but we were astonished when we read your response which  said that you refused  our work that was accepted (with reservation) by the other 3 referees.  We think and feel that it was not fair enough.
 Actually we respect your own opinion but we are surprised!; how it comes to reject a case report of POIS (the rare disease) and say that you encourage publication in that topic?!. Is it related to  what you think that; the idea of atopy may be a precipitating factor for POIS  is yours and not ours ?!.  We think that this is not true. This is because we discovered our case by the end of 2009 and at that time you have only one publication in 2002- in which you didn't refer at all to atopy. We have found that our patient is atopic and in addition to the cognitive  and body pains he feels post orgasmic; his atopy flares  up  eye irritation with severe body itching. By December 2009 and after preparing the report and before its publication we sent you 3 e-mails with about one week intervals,  by the full length paper to ask you your experience as the only reporter of this syndrome - at that time -  but sadly enough we didn't receive any reply.  Please, return back to your archive. Moreover;  in 2010; we shared the ISSM forum by this case report  also before you mention at all any relation of POIS to atopy -  you mentioned it only in your publication at 2011 -  and many of our colleagues who are ISSM members  shared by comments and discussion ; we remember that one of them was Prof. David Goldmeier. Please go back to the ISSM Forum 2010. This case report was presented  as a poster in the 20th World Congress for Sexual Health, held in June 12- 16, 2011, Glasgow, UK  , and published in its  proceedings . For the before mentioned reasons we think that; it is ours and not yours that; atopy may be a precipitating factor for POIS and we must ask about and check for it in any of POIS cases.
Our Dear Dr  Waldinger, in your reply one of the reasons for which you refused our case report -as you stated - is that we mentioned that; NSAIDs, tramadol and SSRIs may help and you didn't find any response to these drugs. We want to remind you that this is not our findings  but the references mentioned and our patient didn?t get any benefit from trying these drugs;  please you can read our case report again !.
What we feel very important and we want to discuss is the skin prick test as a diagnostic test for allergy. Do you think that it is a reliable one in this regard?  is it  enough to reach the final conclusion that POIS patients are allergic to their own semen and that this is the cause of POIS?. Basically; we know -  and it is scientifically proved -  that this test  has many false positive and negative results. Moreover; we as andrologists ; knew - and it is scientifically proved as well that; our semen is foreign for our body and our  immune system.  Immunologic tolerance to it  is not present as it formed only after our puberty where the immune system didn't identify it in utero. For this reason our God totally separated it from our immune system by what is well known now as the very competent Blood  Testis barrier that is formed by the highly efficient Sertoli Sertoli cell junctional complex.  It is not - as you mentioned on you tube - a hypothetical membrane. Only in certain known pathologic conditions this barrier may be broken. If occurred we form auto-antibodies against our semen. So; when we inject our own semen intradermaly we will react positively to it  as it is a foreign antigen for us. Please try to apply this very simple prick test for you and your assistants using your own semen; mostly you will get a positive reaction without having POIS. Moreover; if we suppose that;  allergy to the patient's  own semen is the cause of POIS; it was mandatory to measure serum and seminal plasma anti-sperm antibodies; IgA, IgG and IgM, to do immuno bead and MAR testing and to report on the patient's seminogram changes as in such cases ? if this is true -  POIS patients will  be mostly infertile as well. So; as you depended only upon the unreliable  skin prick test  and for the afore mentioned scientific facts,  we  - and we think that we will be shared by anyone who is interested in andrology -    think that; your conclusion is not right and we can't scientifically accept  that the cause of POIS is allergy to own semen.  
Dear Prof, we are surprised; how it comes that; only from two patients ? without placebo control ? wants us to accept that; hyposensitization using the patient's own semen is the treatment of POIS!.  Although your last two papers are published in a highly respectable journal we are sorry to say that; this is not right from the scientific facts mentioned above and they are only two patients. We think that; any benefit  if any is not more than placebo.
 
Thanks,   
Prof. Dr Abdalla attia & Dr  Hossam Yasien
Andrology Unit,
Faculty of Medicine,
Minoufiya University,
Egypt

 = = = = = = = = = = = = = = = = = = = = = = = = =

yasienhossam, thank you for your excellent questioning!

I hope Waldinger will respond.

Best regards,
Demo

ps - contact info

Prof. dr. Marcel D. Waldinger
dr.m.d.waldinger@gmail.com

Dear Drs. Attia and Yasein,

I was just advised by demografx of your post.

Please apply for the POIS grant!!!  We'll give you an extension on the deadline.

Here's a link to the application:   http://tinyurl.com/bwhbn5k

FYI, we did send Dr. Attia the POIS RFP when it was first posted, because we had seen Dr. Attia's poster presentation from a conference that took place about one or two years ago.  Perhaps we had an incorrect email address for Dr. Attia.

Stefanie Putkowski, RN
NORD Research Program Administrator
research@rarediseases.org

[demografx]

This is the article that was NOT approved [it was rejected by Waldinger, according to the letter from Egypt:
http://f1000research.com/articles/2-113/v1

My opinion: it was a hurtful, unnecessary, competitive slam.

[Jon]

Stef,

Thank you for your optimism for people in this group. It is truly selfless of you to comfort people who are going through POIS. I'm sure you have given hope to many people.

I do understand that I my writing can be understood, and that is a good thing. However, it doesn't change my status and the fact that I am getting worse. I do agree that research might give us some answers, And hopefully even some answers for a case like mine which is a little more on the severe side. This is whats happening. I will fight for as long as I can function. I still have hope even in the spot that I am in.

Thank you again for your generosity to everyone,

Jon.

[demografx]

We were astonished when we read [Dr. Waldinger's] response which  said that you [Dr. Waldinger] refused  our work that was accepted (with reservation) by the other 3 referees.

Some of us were not surprised: you point out scientifically what many of us have been questioning extensively about this so-called  "desensitization" for a very, very long time. Thank you.

By December 2009 and after preparing the report and before its publication we sent you [Dr Waldinger] 3 e-mails with about one week intervals,  by the full length paper to ask you your experience as the only reporter of this syndrome - at that time -  but sadly enough we didn't receive any reply.  

This has been the experience of many people here, including mine: nonresponsiveness.

[demografx]

If anyone wishes the 2 doctors to apply for our POIS Grant, please write and encourage them to submit a simple request for an application extension.

Stef offered this to us (see her post below).

EMAIL THEM AT:
yasienhossam@yahoo.com

================================================
YOU CAN SIMPLY COPY AND PASTE THIS IN YOUR EMAIL:

"Dear Drs. Attia and Yasien,

Please apply for the POIS grant! We'll give you an extension on the deadline.

Here's a link to the application:   http://tinyurl.com/bwhbn5k

Sincerely,
POIScenter forum member ____________________  "
================================================


Prof. Dr Abdalla Attia & Dr  Hossam Yasien
Andrology Unit,
Faculty of Medicine,
Minoufiya University,
Egypt


Many thanks!
Demo

Dear Drs. Attia and Yasien,

I was just advised by demografx of your post.

Please apply for the POIS grant!!!  We'll give you an extension on the deadline.

Here's a link to the application:   http://tinyurl.com/bwhbn5k

FYI, we did send Dr. Attia the POIS RFP when it was first posted, because we had seen Dr. Attia's poster presentation from a conference that took place about one or two years ago.  Perhaps we had an incorrect email address for Dr. Attia.

Stefanie Putkowski, RN
NORD Research Program Administrator
research@rarediseases.org

[poiseidon]

What about Dr. Salamanca of Madrid?
I think he's working on it too "with fairly good results"...

[demografx]

What about Dr. Salamanca of Madrid?
I think he's working on it too "with fairly good results"...

I think that Dr Salamanca was on NORD's list of researchers, in which case he received the RFP.

If not, someone with Dr Salamanca's email should send him a request to have a Grant extension (to Stefanie Putkowski, Grant Administrator ( rn@raredisorders.org ), and please include our link to "POIS RFP, 2013":
http://tinyurl.com/bwhbn5k

Remember, that even if Dr Salamanca received the POIS RFP already, it can't hurt to send him another RFP. It shows interest on OUR part in him. Which in turn, may sway him to go to the effort of extending, then submitting a full application -- quickly.

[demografx]

"Successful remedies" : http://www.helpmypois.info/

I like the 'Coming Soon' graphic layout of your "Successful Remedies".

Intrigued. Looking forward to seeing it when it's ready.

[demografx]

Submitted by one of our Forum members

[Vincent M]

Update on my feed reader tests: During the past 7 days there were about 100 posts posted at poiscenter and this completely filled the "recent posts" section as it records 10 posts on every page and consists of 10 pages total.

Microsoft Office Outlook 2007: Only sent 5 posts during this time frame. It missed 95% of the total 100 posts over the last 7 days.

Bloglines.com: Sent 70 of the posts during this time frame. It missed 30% of the 100 posts.

I've looked through the settings options in case I needed to tweak something, but it doesn't seem like there is any way to correct the problem using those applications. So in conclusion both of them have failed in my opinion and I won't be spending any more time on this.

[Vincent M]

I tried to register in bloglines.com, but every username that I put they said was taken. Something wrong, because it didn't matter WHAT I put!

It took me a few tries before it accepted a username for me, but the site does seem a bit glitchy.

[Vincent M]

Ok let me get this straight. For Dr. Yasen its scientifically unacceptable the immune theory. Moreover the desens therapy is just a placebo at best, if not dangerous.
For Dr. Yasen it's more likely an atopic hypothesis. He tries to tell Dr. Waldinger which pretetends not to listen refusing his papers and not replying his mails and stealing the atopy theory instead.
This is what i got about the whole thing. Is that what happened?

But I just don't understand.. Some users like vandemolen reported some improvement with desens. Are all of them a placebo effect ?

Drs. Attia and Yasien are saying that the skin prick tests for POIS might not be a valid test for POIS because most(or all) normal healthy men would have a reaction to the test. The reason for this is that even in a normal man the individual's own sperm is treated as a foreign substance by his immune system. I don't think this means anything definitive about immunotherapy(desens). My thought is that perhaps POIS sufferers would tend to have greater and more visible skin reactions to semen than healthy subjects. I'm not entirely sure about the rest of it, but by saying POIS sufferers are likely to be atopic it appears to me that they believe we may tend to have more allergies in general than the norm.