Desensitization, Fact or Fiction?

[demografx]

This is all theory.
FACT: I have 70 % less symptoms.
FACT: I can have an O 3 or 4 times a week, without having big problems. Used to be once a month.

You, like me are 1 in how many?

Through a poll we could probably get a proportion of success for niacin and/or other treatments.
Could we do that for desens? What would the results be?

In the end, the FACT is, that there is no valid research OR proof. NO data on long term results of ANY program, including long term health
hazards (or benefits).

We need research.

Our members are ready and willing to test anything. This is dangerous, but they seem to want to press on anyways. They know that any tests SHOULD be done under
doctor supervision. This usually doesn't happen. I wish it could be otherwise.

But so far, our own members' personal trial and error programs (albeit not recommended and even dangerous)  provide data as useful or more-so than ANY professional
program in place. It's probably why they prefer not to rely on doctor supervision. At least there is transparent data. Where treatments don't work our members inform the rest.

I am coming out strong against this program because there is a potential for great danger, and it doesn't help that "official results" are so controlled.

We have been pushing for REAL research now for just about as long as some of you started on the desens route. We have been pushing because we are beating a dead horse until that research comes through.

As you said Van, it is ALL theory. Despite yours or my success.

Exactly, Daveman!

We need REAL research!

Period!

[demografx]

I am coming out strong against this program because there is a potential for great danger.

Exactly my reason!

Since 2007, dangerous, life-threatening procedures have been banned from this forum when promoted. We have actually STRETCHED our leniency here with desensitization. Desensitization leniency (and any other unnecessarily dangerous procedure -- one without REAL research to back it up) will end if we see any unnecessary harm coming to any individual forum member!

Daveman and I want POIS treatment success for everyone, no matter what the procedure. But we question high risk treatment at a time when we know so little about POIS!

[kurtosis]

Does everyone who is undergoing desensitisation treatment know what to do If they go into shock, for example if they have an orgasm?
Let's forget about having an NE for the moment.
Does everyone have an epi-pen for instance?

http://en.wikipedia.org/wiki/Epinephrine_autoinjector

[demografx]

Thanks, kurtosis!

Epi-pens have saved lives!

[demografx]

Another [desensitization] risk that we haven't even touched on yet. What if we don't have an allergy to sperm? What if we don't have sperm antibodies in our system? What if skin prick tests aren't relevant. Maybe a negative reaction doesn't mean we are allergic and maybe no negative reaction doesn't mean we are not. What happens if we start introducing sperm to our bloodstream when we don't have antibodies?

We create antibodies, and then we create anti-bodies to those antibodies (which is desensitization), desensitizing ourselves to something we never had to start with, and creating an immunological battle within us that wasn't necessary to begin with..... on top of POIS!

This is Desensitization Major Risk #2 -  that of desensitization potentially creating yet a NEW autoimmune problem  -- in addition to POIS! - which we have not really addressed till now, so it's highlighted above (enlarged).

Thanks, Daveman!

[kurtosis]

Another [desensitization] risk that we haven't even touched on yet. What if we don't have an allergy to sperm? What if we don't have sperm antibodies in our system? What if skin prick tests aren't relevant. Maybe a negative reaction doesn't mean we are allergic and maybe no negative reaction doesn't mean we are not. What happens if we start introducing sperm to our bloodstream when we don't have antibodies?

We create antibodies, and then we create anti-bodies to those antibodies (which is desensitization), desensitizing ourselves to something we never had to start with, and creating an immunological battle within us that wasn't necessary to begin with..... on top of POIS!

This is Desensitization Major Risk #2 -  that of desensitization potentially creating yet a NEW autoimmune problem  -- in addition to POIS! - which we have not really addressed till now, so it's highlighted above (enlarged).

Thanks, Daveman!

That would be one good reason to have and be able to use an epi-pen

[Daveman]

Uuufff, that's an angle of all of this that I hadn't even grasped..... two-fold actually.

1) Not only that we MAY be creating an allergy that didn't previously exist, AND THEN developing an auto-immue response to it, but we could potentially cause our body to react to a much higher AND uncontrolled dose of the allergen merely by having an orgasm!! So potential for anaphylaxis merely by having an orgasm!

2) As part of their procedures and pre-testing allergists first define the allergen and determine the level of exposure to it during everyday living. Once it's defined they can administer the treatment with controlled doses so as to begin the desensitization. And they are present for the dangerous period just in case. I'm not sure that's really been done with semen. Semen has a number of components. Which is the allergen? As I understand it, THEY DON'T KNOW. Let's say we ARE allergic to sperm. Does desensitization with semen lead to creation of allergies to the other components? Shouldn't we be isolating the allergen?

AND, we are exposed to STRONG doses of the supposed allergen every time we ejaculate!

Epi-pens everyone!!








 

[demografx]

This is all theory.
FACT: I have 70 % less symptoms.
FACT: I can have an O 3 or 4 times a week, without having big problems. Used to be once a month.

FACT: Currently, anaphylaxis leads to 500–1,000 deaths per year in the United States, 20 deaths per year in the United Kingdom, and 15 deaths per year in Australia.

http://en.m.wikipedia.org/wiki/Anaphylaxis#section_8

[demografx]

So....maybe you will be lucky.

Big question: do we have enough SOLID RESEARCH EVIDENCE to indicate it's worth the risk?

My answer: no.

[Ccconfucius]

I know that those of you who are "gung ho" on the desensitization program are not going to be convinced, and worse, will probably become alienated to our whole movement. But in private discussions it has been asked, "if you feel that there is such danger in this program, why are you supporting it on the forum?". It's all too political even legal!

Not gung ho for dessensitization but determined to get rid of pois. And at moment one of the few weapons to experiment with is dessensitization.  And i because we are willing to try dessensitization doesnt mean we going be alienated from the forums movement which is to solve pois through further reasearch.    

minus the sublingual experiments, which have very little backing because we are not sure if the semen is reaching the immune cells needed to start dessensitization, there not even ten people trying dessensitization and they have not be doing for the intended lenght.
And i dont think you know the total amount of official people dr waldinger and co doctors are treating.  We need to know their stories to get the full picture on dessensitization.   I wish dr waldinger will give us more information.


It is worth the risk because i dont think the risk is bad if dessenistization is done right.  The point of dessensitization is to reduce immune reaction so if we do build a new  immune reaction to a subtance theroectically that reaction should go down over the course of the program. And if that reaction were to occur it will have occured in the earlier stages.  And if increased reaction  was the problem every subsequent shot should become increasing painfully and in my case and vandemolens it is the opposite.      

Dessensitization is definately a theory and who knows if it is the all be all theory but every theory needs time and experiment.
Dessenistization should not be dismissed just yet it is still new theory in scientific terms.

Am all for reasearch but research takes time. And during that time what are my options.

[demografx]

Well stated, CertainlyPOIS!

[Vincent M]

Personally I don't see the danger in the SLIT version of desens., seeing as during ejaculation you're exposed to pure semen anyway, but I can understand the concern. I swallowed pure semen almost every night for 3 months in my SLIT trial with no positive or negative effect, but everyone's body is different.

Incorrectly using an epi-pen sounds like it could be more dangerous than swallowing semen so my suggestion on this issue is maybe it'd be good to take some benadryl when you perform your desens as a small preventative measure in case anaphylaxis does occur.

[demografx]

Thanks, Vincent!

[Stef]

Personally I don't see the danger in the SLIT version of desens., seeing as during ejaculation you're exposed to pure semen anyway, but I can understand the concern. I swallowed pure semen almost every night for 3 months in my SLIT trial with no positive or negative effect, but everyone's body is different.

Incorrectly using an epi-pen sounds like it could be more dangerous than swallowing semen so my suggestion on this issue is maybe it'd be good to take some benadryl when you perform your desens as a small preventative measure in case anaphylaxis does occur.

VM and Everyone,

No -- using an epi-pen incorrectly is not dangerous.  It's actually very safe, very easy to self-administer, and a good physician will only prescribe one-two epi-pens at a time.  They have saved countless lives. Even people with serious heart conditions who also have severe allergies (like to shellfish, for example) are prescribed epi-pens -- and should always carry one with them.

I've seen one or two anaphylaxis episodes as a nurse -- neither patient lived through it.  ANAPHYLAXIS is a worst nightmare -- an immediate emergency tracheotomy is needed because the throat swells up, the blood pressure bottoms out -- every single second counts.  So -- if one has an epi-pen, those symptoms can be stopped in their tracks (most of the time) and a life can be saved.

SLIT therapy with any allergen -- if not done in the doc's office under very careful supervision -- can definitely, unequivocally be deadly. 

For those of you who are trying your own version of semen SLIT therapy -- I honestly doubt that you are accomplishing anything. (I don't mean to be at all disrespectful here.)  IF there is a component of semen that is causing POIS -- a true, bona fide allergist would isolate that component and administer it on its own, in slowly increasing dosages, under very cautious supervision. 

I think that simply diluting semen is not the same as real SLIT therapy -- because the person is receiving semen in total -- not the specific allergic component (if one exists) in increasingly therapeutic doses.

Stef

[demografx]

Thank you, Stef!