Author Topic: Desensitization, Fact or Fiction?  (Read 34782 times)

Daveman

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Desensitization, Fact or Fiction?
« on: October 28, 2012, 08:08:32 AM »
There has been a lot of interest in having a thread to discuss the pros and cons of the desensitization theory. To be honest the interest actually stems from concerns over the dangers / cons, but the goal of the thread is to open the discussion to both sides.

We must remember that up until now, THERE HAS BEEN NO DEFINITIVE RESEARCH pro OR con, neither for desensitization nor for anything other solution. I’m not sure that the implication of this is really understood. However, while we are so intent on conjecture, we may as well follow forth and try to shed more light in this area.

Because of the potential dangers involved in the desensitization program, we shall likely tend against it, however, we hope not to do so without at least a  trace of technical and medical back up. We hope that supporters of the desensitization proposition will also do so with like rigor.

In a conversation between an allergist/immunologist at Yale and a well known NORD participant on board a plane to the American Academy of Pediatrics  annual conference,  issues involved in desensitization were discussed, in particular SLIT (Sub-Lingual ImmunoTherapy). The doctor, who’s name we can’t disclose at this time, as the discussion was “off the record”, was a keynote speaker at this conference who’s principal theme related to anaphylaxis in children.

In relation to SLIT,  he indicated  that in Europe, there are better results with SLIT because they use higher concentrations of the allergen.  These concentrations aren't available in the US.  He said that any US doctor offering SLIT therapy (in the US) is not being honest with his/her patients about the efficacy -- he/she will have a cash customer for YEARS because those higher concentrations are simply not available here.

It was asked “why they're not available in the US?”.  He replied that they are DANGEROUS.  He also said (with NO prompting ) that anyone trying SLIT therapy at home, regardless of the dose, is putting him/herself in great danger of anaphylaxis.  In Europe it must be done in the doc's office under close supervision -- the patient needs to wait in the office for 1/2 hour before leaving -- because anaphylaxis can occur within that 30 minutes.

Last – he was asked how long people need to take allergy shots (SCIT, Sub-Cutaneous Immunotherapy) in general. His reply was "two - three years at the most."  Remember,  SCIT is more effective due to the stronger dilutions and more intimate infusion of the allergen.

The allergist indicated that he took desensitization shots for severe mold allergies for almost two years  “ they helped “, he says, “ but I started getting asthma reactions in the office in that 30-minute period”.  The allergist indicated that “it's time to stop this approach -- not worth the risk”.

This was a discussion by a well know allergist and dealt ONLY with anaphylaxis, perhaps touching lightly on the affectivity issue. But there are much deeper concerns expressed about longer term and much more serious issues involved on a desensitization program involving sperm.

On another note, an experienced allergist comments:  she thought the sperm allergy hypothesis is ridiculous. She's even had women come to her practice who don't know about POIS, but who get the sniffles and sometimes a headache following an orgasm and she said it's just accepted (and well known) that this is down to histamine release. They might not be getting as bad cognitive symptoms so the POIS sufferer may just have something wrong with the H3 receptor (or histamine metabolism) in the central nervous system.

So if female allergic reactions to sex are well known, what is Dr. Waldinger thinking?

A more likely answer is that semen injections increase histamine in EVERYBODY and his desens treatment forces the body to lower histamine (via the normal feedback mechanism) while teetering on the brink of anaphylaxis. i.e. he could use any allergen to do this, the use of semen just fits his theory.

And unfortunately, so far it is little more than a theory, as research has provided very little undisputable evidence that we are indeed allergic to our own semen.
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!

Starsky

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Re: Desensitization, Fact or Fiction?
« Reply #1 on: October 28, 2012, 09:12:04 AM »
You must remember that semen is not just a bunch of anibodies, but a mix of different hormones which are biologically active. The most famous person who was injecting semen (from a bull) was A. Hitler, which gave him the vitality that he needed.

As i know there is no POIS patient who got anaphylaxis from SCIT, SLIT or just orgasm.
« Last Edit: October 28, 2012, 09:15:37 AM by Starsky »

Daveman

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Re: Desensitization, Fact or Fiction?
« Reply #2 on: October 28, 2012, 10:23:21 AM »
You must remember that semen is not just a bunch of anibodies, but a mix of different hormones which are biologically active. The most famous person who was injecting semen (from a bull) was A. Hitler, which gave him the vitality that he needed.

As i know there is no POIS patient who got anaphylaxis from SCIT, SLIT or just orgasm.

Although anaphylaxis is not the main issue, IF it happens you can die within minutes and this is NOT a myth. Most desensitization programs that work for other allergens, work best close to the the anaphylaxis limit. Some programs entered into by some "professionals" (no specific or implied reference here whatsoever), are far from that limit, and therefore far from being as effective. Which means that the treatment lasts quite a bit longer. The sessions can be costly.

It's one thing to take too much niacin and have an uncomfortable flush. It's another to die in seconds!

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!

demografx

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Re: Desensitization, Fact or Fiction?
« Reply #3 on: October 28, 2012, 11:37:20 AM »
Well said, Daveman :(
Usually have major 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 associated with it.

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

Daveman

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Re: Desensitization, Fact or Fiction?
« Reply #4 on: October 28, 2012, 12:19:09 PM »
You must remember that semen is not just a bunch of anibodies, but a mix of different hormones which are biologically active. The most famous person who was injecting semen (from a bull) was A. Hitler, which gave him the vitality that he needed.

As i know there is no POIS patient who got anaphylaxis from SCIT, SLIT or just orgasm.

Unfortunately A. Hitler isn't one of the best examples of a normal person.

In any case, semen contains the sperm, not necessarily the antibodies.

However you are probably more correct than you think. Reactions to hormones and proteins and components in sperm may well create histamine generation and or other reactions in the catacholamine chain that temporarily produce noticeable effects....  (We know that it gives those that try it POIS, we have heard that it seems to reduce POIS symptoms... although nobody is really convincing) but all this at a very high risk of anaphylactic shock (A/S). And it can't be taken lightly that no-one has experienced A/S yet, it only requires one to die. How would you feel, one of our own......?

Another 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!

We are experimenters. We only want to kill this thing. We will do anything to get to the bottom of it (even risk death), but  donate to research???.... I really don't understand!

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!

demografx

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Re: Desensitization, Fact or Fiction?
« Reply #5 on: October 29, 2012, 10:42:01 AM »



The most famous person who was injecting semen (from a bull) was A. Hitler, which gave him the vitality that he needed.


Unfortunately A. Hitler isn't one of the best examples of a normal person.


 ;D ;D ;D
Usually have major 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 associated with it.

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

demografx

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Re: Desensitization, Fact or Fiction?
« Reply #6 on: October 30, 2012, 04:24:57 PM »
The potential for anaphylaxis is there.

And real.

And can cause death!!

I just hope that not even ***one*** experimenter ever gets sick or dies in the future!

Needlessly.

Especially before REAL research (yes, with control groups ;D ) gets done.

Thank you.

demo











« Last Edit: October 30, 2012, 04:26:59 PM by demografx »
Usually have major 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 associated with it.

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

Andy451

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Re: Desensitization, Fact or Fiction?
« Reply #7 on: November 01, 2012, 02:21:13 PM »
The proposed allergic reaction has nothing to do with sperm as noted by Dr. Waldinger, it is semen that may cause an allergic reaction. The contents contained in seminal fluid vs. your sperm are entirely different. Semen is a much more likely culprit in the induction of an autoimmune response of any sort. Anaphylaxis can occur and cause death in the treatment of almost any extreme allergy, assuming this is such. Even so, extreme cases of allergies have been effectively treated in other cases to increase the quality of life for the patient. To be clear about Dr. Waldinger's "theory," it is barely even that at this stage in the game. It is a flawed working hypothesis without extensive testing to credit or disprove the idea, which is very typical of any new disease, disorder or syndrome in medical science. We are human test subjects whether we like it or not. I use every method I hear of in remedying POIS, specifically because mine is constant and extreme. Until OBJECTIVELY PROVEN by consensus in the SCIENTIFIC COMMUNITY we can speculate all we want about treatments validity or lack there of, but the reality is we just don't know at this time.

I am fully aware of the risks of the desensitization treatment I am undergoing as of now, but it is no less risky than overdosing on niacin which can cause heart or liver failure. That is why dosing must be correct and specific according to your own body's tolerance with either treatment and until you try these things for yourself, you will not know what can be tolerated. I am extremely thankful for the information about the Niacin Daveman, and it definitely helps increasing the pleasurability of orgasms for me, yet has not done anything significant for the vast majority of my symptoms as of now.The same can be said for my desensitization treatment though as well. I will continue to take the Niacin and continue my desensitization treatment while eating well and exercising religiously in order to cover all bases. I have also considered hormonal therapies, yet I believe both neurological and hormonal responses are secondary to the immunological ones in my case being that my hormones are mostly balanced upon initial examination with the exception of slightly high cortisol and testosterone. We are debating the chicken or the egg when it comes to biological matters of this complexity and our speculation doesn't matter without testing with the help of the medical community.

To be perfectly clear, fiction is something fabricated and what is happening here does take a certain amount of imagination, as many ideas to solve problems which would never have had answers even 15 years ago. Everyone on this forum is different and I would encourage all of you to do whatever treatment works for you and what is comfortable. Please realize though, you may have to take risks you did not intend on taking to get better.
28 yo M- POIS for 16yrs (since age 12). Chronic POIS- always there

Tried desensitization for 1.5yrs & was unsuccessful (POIS worse at 1/1000)

 Exercising- (running/light weights/situps/yoga) Ice my perineum. Gluten-free. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

demografx

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Re: Desensitization, Fact or Fiction?
« Reply #8 on: November 01, 2012, 03:53:06 PM »
Thank you, Andy451. Very balanced.

Best wishes for treatment success!

demo
« Last Edit: November 01, 2012, 03:56:25 PM by demografx »
Usually have major 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 associated with it.

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

Daveman

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Re: Desensitization, Fact or Fiction?
« Reply #9 on: November 01, 2012, 04:08:52 PM »
Andy451, I am amazed at how much your words reflect mine of little over a year ago.

I was THE staunchest supporter of Dr. Waldinger's theory.

I do however disagree with your quotes "but it is no less risky than overdosing on niacin which can cause heart or liver failure".

Niacin, or many other potential remedies have caused suffering to several of us, particularly prescription based SSRIs prescribed
by professional doctors to treat POIS.

One in our midst overdosed on nutmeg, yes nutmeg, others have, against all counselling and recommendation, taken extraordinary doses of niacin and other otherwise harmless substances, only to pass very uncomfortable moments. So far, none that I know, have suffered permanent damage, and this includes home desensitization programs..... But, pure luck!

I really don't want to see the day that one of us dies from this experimentation.

But home remedies with things like niacin, have potential if taken beyond recommended doses and without supervision, to cause liver, or heart damage over prolonged periods, but warnings can often be perceived, often in time to adjust. Anaphylaxis however is INSTANT, and usually mortal. It's more than just a bad time.

But that's not the worst of the desensitization program. Under certain conditions, it is possible to give yourself (on top of POIS) an irreversible autoimmune disease which can, if not shorten your life, make it much less comfortable. It's not easy, as the condition may well be as rare as POIS, but we are looking to find a way to demonstrate the potential that desensitization has to create this condition and define it's characteristics.

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!

demografx

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Re: Desensitization, Fact or Fiction?
« Reply #10 on: November 01, 2012, 08:08:51 PM »
Thank you, Daveman!

Very enlightening. I'm glad this thread started!
Usually have major 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 associated with it.

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

Ccconfucius

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Re: Desensitization, Fact or Fiction?
« Reply #11 on: November 01, 2012, 09:07:33 PM »
The proposed allergic reaction has nothing to do with sperm as noted by Dr. Waldinger, it is semen that may cause an allergic reaction. The contents contained in seminal fluid vs. your sperm are entirely different. Semen is a much more likely culprit in the induction of an autoimmune response of any sort. Anaphylaxis can occur and cause death in the treatment of almost any extreme allergy, assuming this is such. Even so, extreme cases of allergies have been effectively treated in other cases to increase the quality of life for the patient. To be clear about Dr. Waldinger's "theory," it is barely even that at this stage in the game. It is a flawed working hypothesis without extensive testing to credit or disprove the idea, which is very typical of any new disease, disorder or syndrome in medical science. We are human test subjects whether we like it or not. I use every method I hear of in remedying POIS, specifically because mine is constant and extreme. Until OBJECTIVELY PROVEN by consensus in the SCIENTIFIC COMMUNITY we can speculate all we want about treatments validity or lack there of, but the reality is we just don't know at this time.

I am fully aware of the risks of the desensitization treatment I am undergoing as of now, but it is no less risky than overdosing on niacin which can cause heart or liver failure. That is why dosing must be correct and specific according to your own body's tolerance with either treatment and until you try these things for yourself, you will not know what can be tolerated. I am extremely thankful for the information about the Niacin Daveman, and it definitely helps increasing the pleasurability of orgasms for me, yet has not done anything significant for the vast majority of my symptoms as of now.The same can be said for my desensitization treatment though as well. I will continue to take the Niacin and continue my desensitization treatment while eating well and exercising religiously in order to cover all bases. I have also considered hormonal therapies, yet I believe both neurological and hormonal responses are secondary to the immunological ones in my case being that my hormones are mostly balanced upon initial examination with the exception of slightly high cortisol and testosterone. We are debating the chicken or the egg when it comes to biological matters of this complexity and our speculation doesn't matter without testing with the help of the medical community.

To be perfectly clear, fiction is something fabricated and what is happening here does take a certain amount of imagination, as many ideas to solve problems which would never have had answers even 15 years ago. Everyone on this forum is different and I would encourage all of you to do whatever treatment works for you and what is comfortable. Please realize though, you may have to take risks you did not intend on taking to get better.

I agree with andy, lets not give up on dessensitization, there are three people that we know who says it is helping alot. Vandemolen and two of dr waldingers subjects.  That means there is at least going to be a certain percent of poisers that dessensitation will help. I also want to add those poisers haven't had any reactions and i also haven't had any reactions and i have been doing it for a year.

Daveman

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Re: Desensitization, Fact or Fiction?
« Reply #12 on: November 02, 2012, 05:29:24 AM »
The proposed allergic reaction has nothing to do with sperm as noted by Dr. Waldinger, it is semen that may cause an allergic reaction. The contents contained in seminal fluid vs. your sperm are entirely different. Semen is a much more likely culprit in the induction of an autoimmune response of any sort. Anaphylaxis can occur and cause death in the treatment of almost any extreme allergy, assuming this is such. Even so, extreme cases of allergies have been effectively treated in other cases to increase the quality of life for the patient. To be clear about Dr. Waldinger's "theory," it is barely even that at this stage in the game. It is a flawed working hypothesis without extensive testing to credit or disprove the idea, which is very typical of any new disease, disorder or syndrome in medical science. We are human test subjects whether we like it or not. I use every method I hear of in remedying POIS, specifically because mine is constant and extreme. Until OBJECTIVELY PROVEN by consensus in the SCIENTIFIC COMMUNITY we can speculate all we want about treatments validity or lack there of, but the reality is we just don't know at this time.

I am fully aware of the risks of the desensitization treatment I am undergoing as of now, but it is no less risky than overdosing on niacin which can cause heart or liver failure. That is why dosing must be correct and specific according to your own body's tolerance with either treatment and until you try these things for yourself, you will not know what can be tolerated. I am extremely thankful for the information about the Niacin Daveman, and it definitely helps increasing the pleasurability of orgasms for me, yet has not done anything significant for the vast majority of my symptoms as of now.The same can be said for my desensitization treatment though as well. I will continue to take the Niacin and continue my desensitization treatment while eating well and exercising religiously in order to cover all bases. I have also considered hormonal therapies, yet I believe both neurological and hormonal responses are secondary to the immunological ones in my case being that my hormones are mostly balanced upon initial examination with the exception of slightly high cortisol and testosterone. We are debating the chicken or the egg when it comes to biological matters of this complexity and our speculation doesn't matter without testing with the help of the medical community.

To be perfectly clear, fiction is something fabricated and what is happening here does take a certain amount of imagination, as many ideas to solve problems which would never have had answers even 15 years ago. Everyone on this forum is different and I would encourage all of you to do whatever treatment works for you and what is comfortable. Please realize though, you may have to take risks you did not intend on taking to get better.

I agree with andy, lets not give up on dessensitization, there are three people that we know who says it is helping alot. Vandemolen and two of dr waldingers subjects.  That means there is at least going to be a certain percent of poisers that dessensitation will help. I also want to add those poisers haven't had any reactions and i also haven't had any reactions and i have been doing it for a year.

At best for desensitization, we have a situation similar to that of niacin, there are a percentage for whom it works and a percentage for whom it doesn't. We don't know what the percentages are, the numbers are quite guarded (why I ask?), but from the "private" programs either done at home or through other local allergists, the numbers are still pretty low. That is, few proven successes against many where the jury is still out.

Granted, "private" programs have not been going for more than 18 months. I know of a couple in official programs that are not going well at all, after many years.

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!

Unfortunately and until we have more concrete research, we are in the dark with ANY approach. So it might be said, "what the hell, do what works!". But "WHAT WORKS?".
What are we doing to ourselves in the meantime? What if we are causing irreversible damage?

It's like signing a contract.... when the fine print is finally "called", we wished we hadn't signed.

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!

Vandemolen

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Re: Desensitization, Fact or Fiction?
« Reply #13 on: November 02, 2012, 06:56:47 AM »
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.
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 70% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

Daveman

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Re: Desensitization, Fact or Fiction?
« Reply #14 on: November 02, 2012, 07:56:47 AM »
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.
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!