Author Topic: Official Desensitization plan Begins!  (Read 151061 times)

b_jim

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Re: Official Desensitization plan Begins!
« Reply #330 on: July 13, 2013, 12:41:59 AM »
Quote
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.





« Last Edit: July 13, 2013, 12:50:32 AM by b_jim »
Taurine = Anti-Pois
Suffering from lyme disease

FloppyBanana

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Re: Official Desensitization plan Begins!
« Reply #331 on: July 13, 2013, 04:49:33 AM »
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
30 years of POIS. Mytelase after O with Iceman breathing technique.

Daveman

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Re: Official Desensitization plan Begins!
« Reply #332 on: July 13, 2013, 12:12:27 PM »
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!

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

FloppyBanana

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Re: Official Desensitization plan Begins!
« Reply #333 on: July 14, 2013, 07:54:24 AM »
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
30 years of POIS. Mytelase after O with Iceman breathing technique.

Daveman

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Re: Official Desensitization plan Begins!
« Reply #334 on: July 15, 2013, 06:19:38 AM »
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.
WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

Stef

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Re: Official Desensitization plan Begins!
« Reply #335 on: July 15, 2013, 08:03:32 AM »
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

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Re: Official Desensitization plan Begins!
« Reply #336 on: July 15, 2013, 11:59:44 AM »
Thank you, Stef.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: Official Desensitization plan Begins!
« Reply #337 on: July 15, 2013, 12:07:35 PM »

[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!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

FloppyBanana

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Re: Official Desensitization plan Begins!
« Reply #338 on: July 15, 2013, 04:01:22 PM »

[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
30 years of POIS. Mytelase after O with Iceman breathing technique.

Egordon

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Re: Official Desensitization plan Begins!
« Reply #339 on: July 24, 2013, 12:08:56 AM »
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))   
POIS since I was about 15. 1.75 years of desens and I'm now about 80% POIS free. Still working through best practices for maintaining my immunity and administering my injections with my doctor. Email me if you have tips or questions!

Egordon

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Re: Official Desensitization plan Begins!
« Reply #340 on: July 24, 2013, 12:14:15 AM »
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...
POIS since I was about 15. 1.75 years of desens and I'm now about 80% POIS free. Still working through best practices for maintaining my immunity and administering my injections with my doctor. Email me if you have tips or questions!

Daveman

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Re: Official Desensitization plan Begins!
« Reply #341 on: July 24, 2013, 06:16:44 AM »
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.
WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

Daveman

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Re: Official Desensitization plan Begins!
« Reply #342 on: July 24, 2013, 02:31:58 PM »
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
WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

Ccconfucius

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Re: Official Desensitization plan Begins!
« Reply #343 on: July 25, 2013, 07:27:16 PM »
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

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Re: Official Desensitization plan Begins!
« Reply #344 on: July 27, 2013, 03:53:58 PM »
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.
« Last Edit: July 27, 2013, 03:59:23 PM by FornicationDENIED »