Official Desensitization plan Begins!

[Daveman]

For our members. If he is authorized, willing and knows what he is doing, it's better than our people doing the treatment themselves or going to someone that will just take them for their money.

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!

Your second point is a very good one, but it's also one that I think my doctor has probably considered. While I'm his first POIS patient, he has desensitized a number of women to the semen of their partners (with no complications), so I don't think he's especially worried about creating innapropriate antibodies. (You guys sometimes talk as though doctors haven't been desensitizing people to semen for decades. This isn't the case.) But I'll ask him. Perhaps they've been able to isolate the allergic compound with that disorder.

Your first point, though, is something you've long been asserting, and which i've long disagreed with. POIS patients get fairly peculiar symptoms upon being injected with semen. I, for instance, get general redness, strong stinging at the injection site, a tiny bit of swelling, and some of my cognitive symptoms. It's not clear to me how one could think these reactions are consistent with mere localized irritation rather than an allergic response. And what (scientific) evidence do you have for thinking as much?

Also, why does the fact that we've seen some ( -- many, really --) POISers that don't react to the skin-prick test make you think that there are non-POISers that would react. If anything, I think it's reasonable to draw the opposite inference. If semen is so irritating and causes this universal reaction, as you say, wouldn't all of our members react? I don't think there's much support -- scientific or speculative -- for your first contention.

I do appreciate your raising the first point, though, and intend to ask my doctor about it soon. And, although I haven't always agreed with the substance or means of your criticism, I hope you know that I respect your concern for the POIS community and your healthy skepticism of received wisdom.

There's a big difference between a woman's reaction to her husbands semen, and a man's reaction to his own semen.

The latter case involves one's own dna and is subject to differing mechanism. This material should not be on the other side of the blood barrier, especially if it is one's own!

I defy ANY of the allergists who are practicing desensitization for POIS to test non-POIS patients. If they all prove negative this would have a great impact on my (our) perception..... and probably many allergists' perception as well. This is the biggest stumbling block, WHY isn't someone working on it? Could it be that it is too risky, or prohibited? I don't know, just asking? But ask yourself. Doesn't it strike you as strange that it is not being done or hasn't been done?

Ask your allergist about this too? Why does he think it hasn't been done?

[FloppyBanana]

FYI
I have had the semen skin prick test (in london by the government hospital) but I found it was not done in accordance with Waldingers method. They simply did a prick (not injection) through undiluted semen. The skin prick was barely through the surface of the skin. When I look at Waldergers POIS vid I can see they inject diluted semen right under the skin. When I can find someone who will do the skin prick test in the right way I will provide them the detailed requirements in Waldergers second paper. The type of semen allergy test I had, as they told me was the same as how they test woman for the potential fatal semen allergy they can have. I have never heard of any male having this type of reaction but I saw an article (in Chinese) explaining that this type of semen allergy is the RAREST condition know. Above even allergy to water, allergy to sunlight and also the elephant man syndrome. On this basis, I would guess that the chance of a male testing positive from the way I had the semen test would be EXTREMELY rare.
FB

Interesting, FB. I'm sorry about that. Well, my doctor tested me for the "allergy" the same way he would've tested anyone else with a different allergy/autoimmune reaction. (There were 3 pricks (no injections): 1 control, 1 histamine, and one semen; we started out at something like 1 : 30,000 but i didn't (unequivocally) test positive until about 1:10.) I'm not sure whether this is in accordance with Waldinger's papers or not.

(As a side note: that's a pretty scientifically scrupulous test. And it tests for one's reaction to histamine, so if we were just having a typical, histamine-release oriented reaction to semen (rather than an abnormal or allergic one) I have a fair amount of confidence my doctor would be able to see as much. I'm not sure that the anti-desens folks are aware that mechanisms like this are already in place to ensure that POIS is an allergy, not just an irritation.)

You are mixing the two types of tests.  The first, the one that FB had done, is the prick test which is done in the surface of the skin. The one, with the injection, is the intradermal test.

I' ve done the two test. The prick I done too 1: 100 and is negative. The intradermal I was positive in 1: 10.000 . In the video, for a remember, Waldinger did the intradermal test. This confusion happens because Waldinger mix the name of the two tests in his survey (my doctor told me that. He thinks it happens because Waldinger isn't a allergist).

Thanks Fidalgo, for clearing that up!

Egordon - You can see in the below video that what is performed is definitely an intradermal test.

http://www.youtube.com/watch?v=1_kqIpGUYpI

Now I know what to ask for without creating a raft of confusion with these allergists/doctors.
FB (UK)

[rock27]

There's a big difference between a woman's reaction to her husbands semen, and a man's reaction to his own semen.

The latter case involves one's own dna and is subject to differing mechanism. This material should not be on the other side of the blood barrier, especially if it is one's own!

I defy ANY of the allergists who are practicing desensitization for POIS to test non-POIS patients. If they all prove negative this would have a great impact on my (our) perception..... and probably many allergists' perception as well. This is the biggest stumbling block, WHY isn't someone working on it? Could it be that it is too risky, or prohibited? I don't know, just asking? But ask yourself. Doesn't it strike you as strange that it is not being done or hasn't been done?

Ask your allergist about this too? Why does he think it hasn't been done?

Research on this is needed but I don't believe sperm in normal males never comes in contact with their blood. When ejaculating the sperm travels and is not in the so called save (conclusive research on this?) testis.  It might meet an infection or injury and the whole penis feels very connected to blood vessels anyway. If we can proof there is contact between sperm and blood in normal males, we don't have to worry about injecting sperm and ethics can never be used as an excuse again.

And maybe when the sperm is broken down (when unused) it also somehow enters the bloodstream.  When I am fully loaded and not having ejaculated I already feel a bit more tired than usual. I think you mentioned this as well Daveman?

[b_jim]

Seriously, I want to make the desensitization myself.
What do I risk  ?
A mistake in dilution ? It doesn't seem more difficult than dillutions I made at school...
A mistake with syringue ? Just find a vein, no air bubble and hop.... subcutaneous
Anaphylactic shoke ? I already put pure semen on bloody scare to test. The reaction is not so powerfull. in my Pois.

[Daveman]

Seriously, I want to make the desensitization myself.
What do I risk  ?
A mistake in dilution ? It doesn't seem more difficult than dillutions I made at school...
A mistake with syringue ? Just find a vein, no air bubble and hop....
Anaphylactic shoke ? I already put pure semen on bloody scare to test. The reaction is not so powerfull. in my Pois.

Not in the veins, NEVER. See that's the problem!

We don't know what we are doing? We just might THINK we do.

[b_jim]

Hmm yes sorry. I mean injections under the skin (subcutaneous) not in veins   
I will ask my doctor if I can get "the little tool" to pr1ck the skin (dont find the word) to the pharmacy.

Anyway I tried once again to rub pure semen on my forearm with the same result : red spots appear after 15-20 min.
After a meal rich in carbohydrates, I had flush all the afternoon.
I'm as convinced by insuline role in my Pois as you are convinced by role of niacine.

[rock27]

Seriously, I want to make the desensitization myself.
What do I risk  ?

It would be crazy to do desenz yourself. You would never know at what dilution you would get a heavy reaction and if your dilution is right what you think it is.
I have not heard about fatalities but I did hear about people doing it and having more reactions than in normal POIS, making their POIS worse and reactions that lasted more than 3 months. So it is Russian roulette to do it really. This is NOT a whisper campaign.
POIS can be caused by different things.
We really need a good diagnostic tool to know which one is your case.

For the record: I really believe in allergy(like) theory, but we need to have the diagnostic tools to know if it applies to you. I hope the research will get us there.
Please don't let us be dependent of dr. Waldinger, who likes to keep things secret (and be the first one to publish) and doesn't answer critical questions of allergists.


Take care
All the best
Thanks Demo and Daveman for keeping the forum alive for so long!

[Daveman]

Seriously, I want to make the desensitization myself.
What do I risk  ?

It would be crazy to do desenz yourself. You would never know at what dilution you would get a heavy reaction and if your dilution is right what you think it is.
I have not heard about fatalities but I did hear about people doing it and having more reactions than in normal POIS, making their POIS worse and reactions that lasted more than 3 months. So it is Russian roulette to do it really. This is NOT a whisper campaign.
POIS can be caused by different things.
We really need a good diagnostic tool to know which one is your case.

For the record: I really believe in allergy(like) theory, but we need to have the diagnostic tools to know if it applies to you. I hope the research will get us there.
Please don't let us be dependent of dr. Waldinger, who likes to keep things secret (and be the first one to publish) and doesn't answer critical questions of allergists.


Take care
All the best
Thanks Demo and Daveman for keeping the forum alive for so long!

Thanks Rock,

What really concerns me, especially if it IS allergy "like", or some other kind of auto-immune reaction but NOT desensitizable allergy, we may be preventing ourselves from benefiting from the REAL solution, just by doing desens. when it shouldn't be called for.

DESENS FOR POIS IS A FANTASY THAT WE ALL WANT TO BELIEVE. IT'S EASY TO BELIEVE. IS IT SAFE? WE BELIEVE SO!
WILL WE REGRET IT? WE DON'T CARE! UNTIL....


Sigh.....

[demografx]

Thanks Demo and Daveman for keeping the forum alive for so long!

You're more than welcome, Rocky! Thank you for your many forum contributions.

[Stef]

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

   



 

[b_jim]

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

.

I can 100% confirm to you the contact of pure semen under the tongue or on direct contact with blood (on a wound) has absolutely no effects on my Pois. The "open door" of Pois is probably more specific.
I practiced SLIT during 1 month. Diluted or pure it has absolutely no effects, no more or less symptoms.

[FloppyBanana]

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

[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!

[FloppyBanana]

Daveman,

I presume you are referring to he as Waldinger, however the success of the treatment has been gauged by the individuals who had the treatment as documented in Waldingers study. They (the people who received treatment-2 people) said they did not want to halt the desensitisation because they felt they were making such positive progress. Of course you already know those people that have been treated Waldinger have been bound to secrecy as part of the study. I don't know why this would be.

Generally speaking I think that to wait for Nord to do a study (the one that will start this year) is a too narrow approach. There is a whole world of professional allergists/sexual health specialists etc out there and some of them are willing to engage with POISers. This is most likely to be on a 1-2-1 basis through POISers searching out medical professionals. Egordon on this forum is one of these people that has an allergist which is treating him and the effects looks to be life changing for him.

Anyone who engages in desensitisation is taking a risk whether it is in POIS research or by another allergist  (I'm not saying they are the same risks).

As for those who want to do desensitisation on themselves; this is a different group of people in my view and they are being irresponsible in their actions.
FB

[Daveman]

Daveman,

I presume you are referring to he as Waldinger, however the success of the treatment has been gauged by the individuals who had the treatment as documented in Waldingers study. They (the people who received treatment-2 people) said they did not want to halt the desensitisation because they felt they were making such positive progress. Of course you already know those people that have been treated Waldinger have been bound to secrecy as part of the study. I don't know why this would be.

Strange don't you think? It is normal to have some secrecy during tests, so that there is no possibility for manipulation or competition. But "secrecy for life?" That is not normal
And a population of two (2), is not something you can call a raging success! We've had more success than that on several approaches right here on the forum.

Of course there have been many more than two tested,  although perhaps not officially. Haven't heard about many of them. Perhaps they let the successful ones speak out a bit more.

Generally speaking I think that to wait for Nord to do a study (the one that will start this year) is a too narrow approach. There is a whole world of professional allergists/sexual health specialists etc out there and some of them are willing to engage with POISers. This is most likely to be on a 1-2-1 basis through POISers searching out medical professionals. Egordon on this forum is one of these people that has an allergist which is treating him and the effects looks to be life changing for him.

Nobody knows what NORD will decide. If they decide to go for allergy theory, I would be happy to accept their choice, because I know they will have very carefully and professionally evaluated all of the options. If they believe it is allergy related, they will have good reason to believe this. It wouldn't surprise me that "auto-immune" (a cousin) gets a good shot. (Just a note, I don't have a clue who has applied nor what their approaches would be)

Anyways, you just can't let your personal judgement sway the lives of 800 members and who know how many more in the world. It's not a pissing contest!

Anyone who engages in desensitisation is taking a risk whether it is in POIS research or by another allergist  (I'm not saying they are the same risks).

There should be NO risk to humans in research. There shouldn't have to be.
If you want to take an approach to test and prove allergy theory, or any theory, there are many approaches that don't involve risk to humans.

Listen, if you are sure that it is an allergy, all the best to you.

Let's hope for your sake, that you are right, and that it won't complicate your life in the future.
Tremendous confidence in yourself and others.....

As for those who want to do desensitisation on themselves; this is a different group of people in my view and they are being irresponsible in their actions.
FB

Agreed.

[Stef]

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,

The two "successes" that Dr. Waldinger reported are unproven -- there's no scientific documentation -- only subjective references to two men reporting improvement.  That is not scientific evidence.

Stef

[demografx]

Thank you, Stef.

[demografx]

[We]  just can't let [our] personal judgement sway the lives of 800 members and who know how many more in the world.

It's not a pissing contest!

Perfectly summarized, Daveman!

[FloppyBanana]

[We]  just can't let [our] personal judgement sway the lives of 800 members and who know how many more in the world.

It's not a pissing contest!

Perfectly summarized, Daveman!

Daveman or Demografx, I have no idea what this slang statement is referring to. Please can you clarify. Are you suggesting the line of this forum is primarily to support the nord approach to finding a solution? "Its not a pissing contest" What on earth is that meant to mean? Are there 800 members of this forum and do you think that one person, myself would be swaying them?
FB

[Egordon]

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))