Official Desensitization plan Begins!

[jotape_chile]

Hi everyone... sorry for being out of the forum. Sometimes it stresses me a bit

Well... the situatios is as follows. I am having a hard believing in this method. It has been a hard time arriving to the 1/1 concentration. POIS everytime.
I do not recall who asked me "?Have you felt ANY relief during the treatment?". Unfortunately not... and I'm very disencouraged by this.

Today I have an appointment again, and I really don't want to auto-POIS me.
Maybe I should follow Vande's advice and slow down... at his time I'm having 1 shot at a month, and though it seems not much, it sill affects me a lot and puts me under a lot of stress.

I think I'll cancel todays appointment... will re think about this method. I am very, very disencouraged by the results. As you can see it's been 1 1/2 years, and I still do not see ANY advance... far less a cure.


My dezens has been going as follows.

DATE         CONCENTRATION   EFFECT   
         
29-06-2011              Prick test +   
13-07-2011   1/40,000   No POIS   
27-07-2011   1/40,000   No POIS   
17-08-2011   1/20,000   No POIS   
07-09-2011   1/20,000   No POIS   
24-09-2011   1/10,000   POIS   
05-10-2011   1/10,000   POIS   
19-10-2011   1/10,000   POIS   
02-11-2011   1/10,000   POIS   
23-11-2011   1/10,000   POIS   
14-12-2011   1/10,000   POIS   
11-01-2012   1/5,000     POIS   
SUSPENDED         
11-06-2012   1/5,000      POIS   
25-06-2012   1/2,500      POIS   
03-07-2012   1/1,250      POIS   
23-07-2012   1/625         POIS   
23-08-2012   1/315         POIS   
03-09-2012   1/105         POIS   
01-10-2012   1/50           POIS   
14-11-2012   1/25           POIS
12-12-2012   1/10           POIS
23-01-2013   1/1             POIS
27-02-2013   1/1             POIS

Thanks everyone.

JP

[Chris]

If there is not even a slightly relief why continuing ?

[Egordon]

JP,

I suspect you just went up far far far too fast, and that you're body still isn't comfortable with the dilutions being administered. I had a somewhat similar problem recently (although I undertook the treatment at a far slower rate than you): when I reached the 1/10 dilution, each time my doctor tried to give me a larger dose of that concentration the glands in my neck began to swell. (I recognize that this isn't quite as bad as getting your symptoms, but for me and my medical staff is was alarming because it would feel as if my throat was closing each time i'd get a shot.) My doctor responded to it by scaling my doses back 1 month and administering this injection until this reaction stopped happening (it took a total of 4 times). After that, they continued the escalation in my dose and i felt far better.

Long story short, if you go up too fast, it makes it more likely that whatever negative symptoms you experience won't go away. 

[b_jim]

I tried to made a pr1ck-test myself (pure semen). The result is negative, the area is not bigger than test with water. Maybe should i try to make an intra-dermis with pure semen myself.

-
 
The other point is I try to remove semen after each ejaculation since 6-7 months (1orgasm /week)
I wonder if the fact to avoid/reduce semen exposure is not a form of desensitization.
I have less symptoms this year.

[Vandemolen]

JP, I am sorry to hear that. There could be a few reasons why it doesn't work for you. 1. Maybe your doctor goes too fast. 2. Maybe desens simply doesn't work for you. It's up to you if you want to give it another try. Goodluck!

[Vandemolen]

B-Jim, be carefull. You know about the dangers and that you can get into shock.

I don't think that removing the semen is a form of desens. With desens you confront your body with something in a bigger dose than usual.
But if removing the semen helps you, that might support the allergy theory in your case. Goodluck!

[b_jim]

I listened to you but i made another test.  I remember last time I had a nocturnal emission I definitely had red skin coloration on my sex.
I tried another time and after 20 min of contact with semen that's not clear. I have some red area anyway.
Anyway I'm not as allergic as some guys here. And maybe my allergy has been reduced last months. Since end of 2012 year I remove semen after each ejaculation to reduce the contact.

[Egordon]

Van,

Who exactly is doing your injections and are they basing their procedures off of a particular peer-reviewed paper? I'm having some trouble getting my doctor to go higher than 1/1. He's suggested that it either wouldn't be injectable or he wouldn't be able to give me a consistent dose. Any tips?

[jotape_chile]

Hello...

I gave up this treatment.

I found no advance in nearly 18 months. Nothing, absolutely nothing.
I won't go again just to pay for a treatment that just makes me feel sick, giving me a kind of "voluntary" POIS.
I'm tired... I'm sorry guys. This is not working for me and I shall try to live with this nightmare.
You can reach me in my e-mail i case you need information or something else.
Regards,

JP

[Stef]

Hello...

I gave up this treatment.

I found no advance in nearly 18 months. Nothing, absolutely nothing.
I won't go again just to pay for a treatment that just makes me feel sick, giving me a kind of "voluntary" POIS.
I'm tired... I'm sorry guys. This is not working for me and I shall try to live with this nightmare.
You can reach me in my e-mail i case you need information or something else.
Regards,

JP

Hi JP and Everyone!

First of all -- to all of you -- you have received more than just a few applications for your POIS grant!!!  I'm not in a position to judge them, and am not allowed to say exactly how many, from whom, etc. (This is the general request of all researchers applying for any grant, and has become a very a strong guideline at NORD). But -- these applications are SERIOUS!! That I can comfortably tell you without breaking any of the rules.

You've got experienced researchers who want to understand POIS!! They're willing to do the work -- they actually WANT to do the work!! The dedication comes right through their applications, loud and clear.

(But that's all I can say -- better quit while I'm ahead!)

Second -- JP, don't let this experience leave you feeling hopeless or down-trodden. Don't be sorry about anything! Yes, you are going to have to "live with this nightmare," a little longer. (It really is quite a nightmare!!!!)

But POIS will be understood -- and the answers/treatment will follow -- perhaps very quickly.  (Honestly -- I just do not think you're going to be waiting long.)

Try to keep remembering -- at this moment, no one knows what POIS is!  You're all on the way to finding out through your research grant, but right now -- there's no answer -- nothing!

Dr. Waldinger, who put POIS on the map, without question would agree. No one knows what POIS is.

(I know -- I sound like a broken record!)

Without ever having communicated with Dr. Waldinger -- he is a scientist, and would agree -- there has been no sound, scientific research.  He has a hypothesis that POIS is an allergic condition -- which may or may not be on track. 

(FYI -- I write this with complete, total respect for Dr. Waldinger and his team!)

Without funding, there's no research -- and with no research, there are no answers. It's just that simple.

And now you've got the funding for the research. 

There has never before been funding for POIS research -- do you all realize this??!!!!  So many of you men on this and the other forum donated what you could -- and with the constant encouragement of demografx and Daveman -- you all pulled together and did it! Demo and Daveman never gave up on encouraging everyone -- and they both walked the walk, also!

(I think demo has amassed a secret stash of animated gifs -- just for POIS donations!) 

The question, "What is POIS" -- will likely be answered very soon.

So, JP -- and everyone -- stay strong -- and believe in your strength. Do not give up seeking treatments to tide you over until the true answers are discovered.

Please just be safe and careful while finding ways to get yourselves through this misery.

The answers are around the corner!
 
Stef

[Ccconfucius]

Hello...

I gave up this treatment.

I found no advance in nearly 18 months. Nothing, absolutely nothing.
I won't go again just to pay for a treatment that just makes me feel sick, giving me a kind of "voluntary" POIS.
I'm tired... I'm sorry guys. This is not working for me and I shall try to live with this nightmare.
You can reach me in my e-mail i case you need information or something else.
Regards,

JP

sorry it did not work for you. you should try other remedies that have helped others one might just help you  a lot.

[poiseidon]

you made me feel good with your words stef. i just hope you re right too..

bless

[Clycos]

This is great news thank you stef!!

[demografx]

Hello...

I gave up this [desensitization] treatment.

I found no advance in nearly 18 months. Nothing, absolutely nothing.
I won't go again just to pay for a treatment that just makes me feel sick, giving me a kind of "voluntary" POIS.
I'm tired... I'm sorry guys. This is not working for me and I shall try to live with this nightmare.
You can reach me in my e-mail i case you need information or something else.
Regards,

JP

JP, I am very sorry to hear this. Please don't give up, we WILL find  Y  O  U  R  solution!!!

[jotape_chile]

Dear friends... thanks a lot for your support.
I do not feel sorry for myself because of the failure in my treatment.
Clearly some accomplishments were reached: Semen inyections caused me POIS, which makes me think this could really be an allergy (or else, who knows). But some relationship exists.

Unfortunately I did not experience any relief in 1,5 years. This procedure cost me dearly: the strong POIS I had the day of the procedure and the day after affected my performance in my job, and many times I could not even go. I was fired last april.
I will give a try to Niacin again... worked for me once, but not a second time.

I thank you all the support, and will continue posting here. Again: if anyone wants to contact me, you can e-mail me :-)
Best regards, we will find a cure.

JP

[Vandemolen]

Sorry to hear that JP. I hope you will find a new job and a treatment where you can find some relief. Yes you should try Niacin again. You never know. Good luck!

[demografx]

By the way you can say prick prick prick here!

But do I have to say pen.is?

<ducking>

[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 Dr. Waldinger will respond.

Best regards,
Demo

ps - contact info

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




[The above was edited from the original below. Edits mostly include  "?" for ' and in some cases ? were removed. My apology if I inadvertently altered any original meaning by the author - demo]


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 refrees.  We think and feel that it was not fare 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 ?  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 send 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 patint?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

[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

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, i.e., (rejected) by Waldinger, according to the letter from Egypt:
http://f1000research.com/articles/2-113/v1