Official Desensitization plan Begins!

[Egordon]

If no one knows what the specific offending agent is in semen, then there can't be desensitization. It's illogical.  I do not mean to offend anyone -- it's the reality of desensitization treatments. They are used strictly for specific allergic conditions.  They are not used for autoimmune conditions.

Nordnurse,
Waldinger has successfully done semen desensitisation on two people. I would be grateful for further clarity?
FB

What does he call success?

Can those individuals talk about their success? Where are they?

Two of how many? Lots and lots of questions!

You know very well that there are several members of the forum that have undergone desens and are more than willing to talk about their success. I, for instance, have made myself available on several occasions. And while i don't have what you would consider scientific evidence of my improvement, I certainly have a sense of my recovery times before and after treatment. That recovery time was cut from three days to 6-8 hours. Six hours! If that's not improvement, I don't know what is.

And, again, where's your proof of anything that you've alleged over the past few months? I'll wait...

[Daveman]

Re: Semen Desensitization Treatments --

When an allergist/immunologist administers desensitization treatments for allergies, the specific allergen has previosly been determined through skin prick and subcutaneous skin testing.

As an example, if there's a pollen allergy, skin-prick tests will show strong reactions ("wheals" that are a particular size) to very specific allergens (oak polllen, birch, grass, ragweed, etc).

With semen, no one knows yet what it is in the semen (if the problem is in the semen!) that anyone is reacting to -- the specific components of semen have not yet been identified as offending agents in POIS.

It's important to remember that an allergic reaction is not an autoimmune reaction. They are entirely different issues!

More than one immunologist has commented that there is a risk of actually inducing an autoimmune condition by SLIT or SCIT with one's own semen.

Daveman said it perfectly -- you are playing Russian roulette by trying to desensitize yourself with semen -- diluted or otherwise. 

If no one knows what the specific offending agent is in semen, then there can't be desensitization. It's illogical.  I do not mean to offend anyone -- it's the reality of desensitization treatments. They are used strictly for specific allergic conditions.  They are not used for autoimmune conditions.

For those of you who have not yet tried SLIT -- don't do it and try to be patient!  You are all so close to finding out what causes POIS. If semen contains an inflammatory agent that is somehow getting into your blood supply and causing POIS, you will learn about it via your research grant. And -- you'll learn if it's an allergic reaction or an autoimmune reaction.

My 28-y/o son is super intelligent (no, I really am not bragging -- he reads his biochemistry book at night to chill out -- with Sinatra playing in the background)  -- and is also extremely
open-minded and non-judgmental. He's a certified physician assistant, working in an urgent care center in So. Florida -- and has seen it all! You cannot imagine some of the medical problems he treats in So. Florida -- POIS does not hold a candle to this stuff! He see's patients with problems that you could not even begin to imagine. 

He's very sympathetic to POIS -- VERY SYMPATHETIC -- and he thinks that you are playing with fire with this desensitization.

Why risk inducing an autoimmune condition on top of POIS?

Please don't take offense from this post.  Try to hold on and be patient for a little while longer.

Stef

It's unclear why you've contended that you can't be desensitized to semen if the offending component isn't isolated. The treatments would still be exposing your immune system to the antigen, and slowly making it accustomed to that exposure. As a nurse ( -- which, and I don't mean any offense by this, is not a doctor --), one would think that you would have access to research papers and sources. And yet you've declined to cite a single source beyond your very intelligent teenaged son.

This seems to be the trend with desens naysayers. They're all adamant in their opinions, but not a single one of them can cite a single research paper, internet website, or doctor willing to speak on the record. And yet their opinions are somehow more credible than the medical professionals (SEASONED ALLERGISTS) that have been treating me over the past year. Please...

Folks, with each additional post it becomes more and more clear that despite the desens truthers' insistence that Waldinger and his related treatments are without proof*, they aren't interested in providing anything even moderately resembling proof themselves.  They're certainly no more credible than Waldinger or the many doctors that have begun to use his methods. And, as their lack of medical certifications suggests, on this particular issue they have significantly less credibility than the medical professionals currently working in the POIS space.


(* This is completely ridiculous, by the way. They quibble that the first piece of research ever fails to provide adequate proof that its method cures those treated by it because the statements of improvement are anecdotal. But surely they are aware that it is incredibly difficult to non-anecdotally demonstrate improvement when a disorder's symptoms are primarily cognitive!?!?! (Especially in a pioneering study))   

The silent (gagged) majority speaks the loudest. Those for whom it didn't work. And I'm afraid you know little about reaserch. There are many ways to  non-anecdotally demonstrate success. If not through blood tests and markers, then through properly constructed cross questioning and CONTROL GROUPS. Any properly trained researcher could pick a million holes in the desens reasearch to date.

EGordon. In case you didn't get it, THIS SITE DOES NOT SUPPORT DESENS (as it is presently being treated at this moment). And we will no longer support this thread and will moderate very strictly conversations about desens. Find a siite that supports desens if you wish.

If or when desens may be seen as a viable for for POIS, it will be much more strongly controlled and directed. At such a time we may reevaluate our position.

NO MORE ABOUT DESENS.

[Daveman]

If no one knows what the specific offending agent is in semen, then there can't be desensitization. It's illogical.  I do not mean to offend anyone -- it's the reality of desensitization treatments. They are used strictly for specific allergic conditions.  They are not used for autoimmune conditions.

Nordnurse,
Waldinger has successfully done semen desensitisation on two people. I would be grateful for further clarity?
FB

What does he call success?

Can those individuals talk about their success? Where are they?

Two of how many? Lots and lots of questions!

You know very well that there are several members of the forum that have undergone desens and are more than willing to talk about their success. I, for instance, have made myself available on several occasions. And while i don't have what you would consider scientific evidence of my improvement, I certainly have a sense of my recovery times before and after treatment. That recovery time was cut from three days to 6-8 hours. Six hours! If that's not improvement, I don't know what is.

And, again, where's your proof of anything that you've alleged over the past few months? I'll wait...

You've been around on these forums for quite some time, so you MUST know that there have been several members who have posted about being refused by renowned allergists for this treatment, members who even sought POIS related investigators. Some of these allergists and investigators have sited the very dangers that you deny exist. Do a search on both NSF AND this forum, and you'll easily find them. It's just that it hasn't been convenient for you.

It's not going to matter what we say, or what anyone says, if there were a panel of experts of 100 investigators you wouldn't believe them.

Also since we are into askiing for proof. Where's your proof (not subjective) that the desens. procedure is safe. Two or three cases in dozens don't cut it

[Ccconfucius]

If no one knows what the specific offending agent is in semen, then there can't be desensitization. It's illogical.  I do not mean to offend anyone -- it's the reality of desensitization treatments. They are used strictly for specific allergic conditions.  They are not used for autoimmune conditions.

Nordnurse,
Waldinger has successfully done semen desensitisation on two people. I would be grateful for further clarity?
FB

What does he call success?

Can those individuals talk about their success? Where are they?

Two of how many? Lots and lots of questions!

You know very well that there are several members of the forum that have undergone desens and are more than willing to talk about their success. I, for instance, have made myself available on several occasions. And while i don't have what you would consider scientific evidence of my improvement, I certainly have a sense of my recovery times before and after treatment. That recovery time was cut from three days to 6-8 hours. Six hours! If that's not improvement, I don't know what is.

And, again, where's your proof of anything that you've alleged over the past few months? I'll wait...

You've been around on these forums for quite some time, so you MUST know that there have been several members who have posted about being refused by renowned allergists for this treatment, members who even sought POIS related investigators. Some of these allergists and investigators have sited the very dangers that you deny exist. Do a search on both NSF AND this forum, and you'll easily find them. It's just that it hasn't been convenient for you.

It's not going to matter what we say, or what anyone says, if there were a panel of experts of 100 investigators you wouldn't believe them.

Also since we are into askiing for proof. Where's your proof (not subjective) that the desens. procedure is safe. Two or three cases in dozens don't cut it

It is time for those of us doing dessensitization to check for semen/sperm antibodies.  This will give us data on the possible longterm effects of dessensitization.

Daveman you should not close than the dessensitization section. I see where you are coming and everyone thinking of doing of dessensitization should take into account  your points.
The section is not breaking any of the rules and it is also helping with reasearch.  Those who advocate of dessensitiztion are not pestering others to try dessensitiztion, they are just giving their experiences. I know when this forum started that is what was in the mind of those that switched. We wanted less restrictions on the experience we were sharing. No one doing dessensitization is advocating the dangerous act of doing dessensitization without professional help.  Dessensitization with all its faults still has more merit than most of the other methods used in this forum.  It has merit because there are four people that have claimed the method help them and it has some scientific backing ( a group of doctors with different backgrounds including a immunologist) eventhough the science might not be totally solid. I know there others that have tried it and it didnt work for them but for those people we dont know whether  the methods their doctors used is sufficient  and if they need to do dessensitization longer.   Like dr waldinger said the results from dessensitization are personal.  Most of the methods we have tried is from personal trials and have no scientific backing and we also dont know the longterms effects of those methods.
The results from trying dessensitization can be used by researchers to rule out dessensitization right away or look further into it before dismissing it.


With all that said, those of doing dessensitization should do an antibody test, if we have positive results then we should consider looking into advocating against dessensitzation.

[FornicationDENIED]

I know this may be somewhat offtopic but read this.
http://www.eurekalert.org/pub_releases/2013-07/jhm-jhr071813.php

Finally some light is shed regarding allergies, and possibly new effective treatments are on the way as long as big pharma can make money off it, good news for me since desensitization is not only unavailable to me (selfish closed minded doctors etc.) but is dangerous thanks to that damn Crohn's disease.

[Egordon]

The silent (gagged) majority speaks the loudest. Those for whom it didn't work. And I'm afraid you know little about reaserch. There are many ways to  non-anecdotally demonstrate success. If not through blood tests and markers, then through properly constructed cross questioning and CONTROL GROUPS. Any properly trained researcher could pick a million holes in the desens reasearch to date.

EGordon. In case you didn't get it, THIS SITE DOES NOT SUPPORT DESENS
NO MORE ABOUT DESENS.

In a certain sense, you're right -- i don't know a huge amount about research. But I am a reasonable and well educated, and it's pretty clear to me that, for patients with primarily cognitive symptoms, the impact of any treatment is going to be incredibly difficult to measure. (Especially since we don't know the exact mechanism by which the symptoms are created.) Waldinger's study discovered POIS as a disorder. Even you must recognize the ridiculousness in suggesting that his study is a failure because it declined to objectively demonstrate improvement in a disorder when, at the outset, he wasn't even sure that disorder existed. 

Also the idea that we can infer that desens is ineffective because not every study participant was highlighted in the paper is highly unscientific. What if they simply were on a different treatment regime? What if they hadn't finished their treatments at the time of publication? There are a host of inferences that you could draw from his failure to include them in the study. I don't think you've chosen the most plausible one.

EGordon. In case you didn't get it, THIS SITE DOES NOT SUPPORT DESENS
NO MORE ABOUT DESENS.

Its good you finally said as much rather than  continuing your pretenses to objectivity. I've got to point out, though, that your current agenda is still entirely unsupported by any kind of published scientific evidence.

[Egordon]

You've been around on these forums for quite some time, so you MUST know that there have been several members who have posted about being refused by renowned allergists for this treatment, members who even sought POIS related investigators. Some of these allergists and investigators have sited the very dangers that you deny exist. Do a search on both NSF AND this forum, and you'll easily find them. It's just that it hasn't been convenient for you.

It's not going to matter what we say, or what anyone says, if there were a panel of experts of 100 investigators you wouldn't believe them.

Also since we are into askiing for proof. Where's your proof (not subjective) that the desens. procedure is safe. Two or three cases in dozens don't cut it

Im skeptical, as you would be, because what you're saying does not jibe with my experience. I've never claimed to know whether desens is safe -- and, quite frankly, I don't know. But the claims that desens is ineffective are often coupled with claims that it is unsafe. And, as I know for a fact that one of those statements is false (in my experience, desens IS unquestionably effective), I can't help but suspect that the idea they are both premised on is untrue.

The idea that I'd be skeptical of your assertions if they were being made by a panel of experts is WAY off base. I don't have any kind of agenda. And as someone undergoing desens, i'm ESPECIALLY interested in any credible evidence that it poses a threat to my health. But no such evidence has been presented. There are no peer-reviewed papers to consider. There are no doctors who have gone on the record, and who we can vet. There's just your assertion that we should take your word for it. And in light of that lack of evidence, i'm weighting my personal experienced more heavily than your unsourced assertions.

[Daveman]

The silent (gagged) majority speaks the loudest. Those for whom it didn't work. And I'm afraid you know little about reaserch. There are many ways to  non-anecdotally demonstrate success. If not through blood tests and markers, then through properly constructed cross questioning and CONTROL GROUPS. Any properly trained researcher could pick a million holes in the desens reasearch to date.

EGordon. In case you didn't get it, THIS SITE DOES NOT SUPPORT DESENS
NO MORE ABOUT DESENS.

In a certain sense, you're right -- i don't know a huge amount about research. But I am a reasonable and well educated, and it's pretty clear to me that, for patients with primarily cognitive symptoms, the impact of any treatment is going to be incredibly difficult to measure. (Especially since we don't know the exact mechanism by which the symptoms are created.) Waldinger's study discovered POIS as a disorder. Even you must recognize the ridiculousness in suggesting that his study is a failure because it declined to objectively demonstrate improvement in a disorder when, at the outset, he wasn't even sure that disorder existed. 

Also the idea that we can infer that desens is ineffective because not every study participant was highlighted in the paper is highly unscientific. What if they simply were on a different treatment regime? What if they hadn't finished their treatments at the time of publication? There are a host of inferences that you could draw from his failure to include them in the study. I don't think you've chosen the most plausible one.

EGordon. In case you didn't get it, THIS SITE DOES NOT SUPPORT DESENS
NO MORE ABOUT DESENS.

Its good you finally said as much rather than  continuing your pretenses to objectivity. I've got to point out, though, that your current agenda is still entirely unsupported by any kind of published scientific evidence.

What Has to be handed to Waldinger, is that he put POIS on the map as a disorder. There is a problem however in that a good majority of doctors and allergist don't find his research compelling enough to "take the risk". You have found one, and that's good for you.

I insist that Dr. Waldinger may not be all that far away from the real problem. It's the specific diagnosis and his solution that I have grave doubts about.

You Say:
"There are a host of inferences that you could draw from his failure to include them in the study. I don't think you've chosen the most plausible one."

We don't all have the same information.

[Daveman]

You've been around on these forums for quite some time, so you MUST know that there have been several members who have posted about being refused by renowned allergists for this treatment, members who even sought POIS related investigators. Some of these allergists and investigators have sited the very dangers that you deny exist. Do a search on both NSF AND this forum, and you'll easily find them. It's just that it hasn't been convenient for you.

It's not going to matter what we say, or what anyone says, if there were a panel of experts of 100 investigators you wouldn't believe them.

Also since we are into askiing for proof. Where's your proof (not subjective) that the desens. procedure is safe. Two or three cases in dozens don't cut it

Im skeptical, as you would be, because what you're saying does not jibe with my experience. I've never claimed to know whether desens is safe -- and, quite frankly, I don't know. But the claims that desens is ineffective are often coupled with claims that it is unsafe. And, as I know for a fact that one of those statements is false (in my experience, desens IS unquestionably effective), I can't help but suspect that the idea they are both premised on is untrue.

The idea that I'd be skeptical of your assertions if they were being made by a panel of experts is WAY off base. I don't have any kind of agenda. And as someone undergoing desens, i'm ESPECIALLY interested in any credible evidence that it poses a threat to my health. But no such evidence has been presented. There are no peer-reviewed papers to consider. There are no doctors who have gone on the record, and who we can vet. There's just your assertion that we should take your word for it. And in light of that lack of evidence, i'm weighting my personal experienced more heavily than your unsourced assertions.

Your doctor hasn't gone on record either, I'm sure he wouldn't dare!

There are agendas behind many assertions of success with desens. Your case is not one of them, and I am very happy for you. I know what it's like to be "POIS free".

It would be WONDERFUL if we could find evidence that desens is safe and effective. But there is NONE. You are feeling better, and as wonderful as that  is, it's not evidence for all.

You have success with desens. I have success with niacin. If people ask about niacin, I tell them, but don't propose niacin as the the method to cure POIS. Beyond that we know that niacin doesn't work for everyone.

The situation is that you can try niaicin, and you know in a week if it works or not. With desens, you don't know for AT LEAST a year. And most of the cases I have heard, suffer during the treatment.

It's such a shame. To some extent it's open to abuse. There are unscrupulous doctors out there who are willing to take on a client with a treatment for a year without having to demonstrate "success". No direct implications of course. But it's another worry of mine for all of those who are out there and looking for someone willing to do the treatment.

[demografx]

You have success with desens. I have success with niacin. If people ask about niacin, I tell them, but don't propose niacin as the the method to cure POIS. Beyond that we know that niacin doesn't work for everyone.

Same goes for my phenomenal success with TRT.

All I know is that it works for demografx.

And it's too risky (possible inability to ever have children) for many younger people.

[FloppyBanana]

This link shows a US medical professional David Y. Josephson, MD, FACS describing POIS as "a true auto-immune response" Can men be allergic to their own semen? He says "Yes". He also advises that Hyposensitisation is an option for treatment (as well as NSAIs and Anti-depresants).

http://on.aol.com/video/post-orgasmic-illness-syndrome-explained-517640680

FB

[Daveman]

This link shows a US medical professional David Y. Josephson, MD, FACS describing POIS as "a true auto-immune response" Can men be allergic to their own semen? He says "Yes". He also advises that Hyposensitisation is an option for treatment (as well as NSAIs and Anti-depresants).

http://on.aol.com/video/post-orgasmic-illness-syndrome-explained-517640680

FB

He may be partly right, but FB...IT'S NOT AN ALLERGY!

Auto-immune MAYBE. Don't get confused!

Nobody knows, not even this guy. It's an opportunity to be in the public eye.

See his picture there on the big screen? WOW.

When you see the REAL research, I think you'll be impressed!

[Vincent M]

I still don't see the validity of his tests:
1) Sperm, semen, shouldn't be on the other side of the blood barrier. It is likely to react with anyone, not just someone with POIS. We have seen some with POIS for whom it does not react. I am positive we would see people without POIS for whom it would react. An allergist should really know that. I suppose he is going on Dr. Waldinger's word!!
2) Semen contains many substances. Testing with sperm is like testing with "soup". You can't say you are allergic to chicken because you tested positive to chicken soup. And if you use chicken soup to desensitize with, you are potentially creating antibodies to things that you didn't have before like potatoes, onions, pepper, whatever!

Sorry to add to this so late, but Daveman's statement that there was a blood barrier for semen, as well as for sperm, piqued my interest. I've read of the testis blood barrier previously, but never of a blood barrier for the prostate and other organs/glands that produce and store the rest of semen. So I googled "prostate blood barrier" and found this study from 2000:

J Urol. 2000 May;163(5):1591-4.
A blood-prostate barrier restricts cell and molecular movement across the rat ventral prostate epithelium.
Fulmer BR, Turner TT.
Source
Department of Urology, University of Virginia Health Sciences Center, Charlottesville, Virginia, USA.
Abstract
INTRODUCTION:
Blood-epithelial barriers have been described in the testis and epididymis, but the possibility of such barriers in other regions of the male genitourinary tract has received little investigation. The purpose of this study was to use in vivo micro-puncture to determine if the blood-epithelial barrier exists in the rat ventral prostate. In addition, using a model of prostatic inflammation, we sought to examine the effect of inflammation on the passage of blood borne molecules and leukocytes into the prostatic ductal lumen.
CONCLUSIONS:
Our findings demonstrate a blood-prostate barrier in the rat ventral prostate with characteristics similar to the blood-testis barrier. This blood-prostate barrier is not affected by LPS-induced acute inflammation. Further, this persistent barrier apparently restricts the passage of leukocytes into prostate DF even in the presence of pronounced interstitial inflammation. This observation may help to explain the observation that expressed prostatic secretions in human males are often free of leukocytes in clinical prostatitis.
http://www.ncbi.nlm.nih.gov/pubmed/10751894

There has probably been other research on this in the past 13 years since that study, but this is relevant to the autoimmune discussion I think.

[Vandemolen]

For the first time I had 2 injections at once. One in my left arm and one in my right arm. So I had a double shot. So after the max dillution the double shot is the next move in my desens program.

[fidalgo]

For the first time I had 2 injections at once. One in my left arm and one in my right arm. So I had a double shot. So after the max dillution the double shot is the next move in my desens program.

And how are you?

[Vandemolen]

I was just yesterday, so I can't tell if it had effect. I have 1 more year to go...
But normally 1 arm hurts for 1 day, not 2 arms. 

[fidalgo]

I was just yesterday, so I can't tell if it had effect. I have 1 more year to go...
But normally 1 arm hurts for 1 day, not 2 arms. 

ri

But how are your POIS? Are You almost cured?

I don't know if you remember that I made a lot of question to you about desens in last year. I start mine in December. I have some improves, my throat, before, inflamate every month. This year I think I have only 2 inflamation. I have much less symptons since after O, but I'm not sure if I have the same improves in the next day. My mood improve, I can do more exercises, my concentration improves....
But what I want to say is that I was expecting more. I still have all symptoms with some improves. I'm happy with this improves, but I thougth that I would be better.... Because of that I ask about your POIS, since it you having done the desens for much time...

[Vandemolen]

Desens works after a few months. So I think you have to be patient. I am on desens 2,5 year. I have 70 % less symptoms. My POIS is gone on day 1 after a few hours. Now I have more problems with my prostate and UTI than POIS.

[Egordon]

Desens works after a few months. So I think you have to be patient. I am on desens 2,5 year. I have 70 % less symptoms. My POIS is gone on day 1 after a few hours. Now I have more problems with my prostate and UTI than POIS.

Van,

I know your doctor is employing some new and exciting desens techniques, but your treatment does seem to have taken quite some time. How often do you go in? Isn't it typical for desens to take about 2 years? (That's the case in America, anyway.)

The things your doctor is trying (concentrations above 1:1; 2 injections of the same solution in different arms) are interesting, but my doctor is somewhat skeptical that they'd work and has been reluctant to try them on me. Do you know how normal these procedures are in Europe?

All of the desensers really appreciate hearing about your therapy. Thanks for sharing and giving input!



Fidalgo,

With time and patience, desens is very effective but it's unlikely to ever eliminate your symptoms entirely. I've been undergoing treatments for about a year and a half now, and while it hasn't completely eliminated POIS, it has gotten me to a point where my symptoms are essentially entirely manageable without medication (NSAIDs) or niacin; I have light symptoms for much of Day 1 and am essentially symptom-free on Day 2.

Like Van, I'd say that severity of my disorder has improved by about 70%. It's a huge improvement but also leaves just enough symptoms behind to make one a bit frustrated -- especially given some of the promises being made regarding it (90% improvement) when it first came out.

Best of luck and keep us updated!

[Vandemolen]

Egordon,

Every type of desens in The Netherlands is 3 to 5 years. I am on desens 2,5 years. But I my treatment is a bit quicker than the first group. But the new patiens have a quicker treatment than me. I think my desens therapy is done about 1 to 1,5 years.

No I never heard about injections in 2 arms. But it went well. I hope that this will help.

In the papers of prof. dr. Waldinger you can read that 1 patient has 90 % improvement, but also a patient of I think 40 or 60 %. It's not the same for everybody. 70 % less symptoms is great. Let's hope that in the next months we both reach 90 %.
Good luck with your treatment.