Post Orgasmic Illness Syndrome (P.O.I.S.)
POIS Cause/Treatment Discussions => Auto-Immune Causes and Treatments => Topic started by: Daveman on October 28, 2012, 08:08:32 AM
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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.
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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.
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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!
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Well said, Daveman :(
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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!
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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
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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
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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.
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Thank you, Andy451. Very balanced.
Best wishes for treatment success!
demo
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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.
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Thank you, Daveman!
Very enlightening. I'm glad this thread started!
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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.
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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.
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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.
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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.
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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!
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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!
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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
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Thanks, kurtosis!
Epi-pens have saved lives!
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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!
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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 :)
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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!!
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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
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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.
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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.
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Well stated, CertainlyPOIS!
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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.
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Thanks, Vincent!
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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
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Thank you, Stef!
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I want to make a positive note!! Believe it or not.
I / we are NOT saying necessarily that sperm desensitization therapy for POIS is BS! Nor is it being said that the allergy theory will not be considered for research.
What is being said is that present research on this subject does not comply with minimums for standard allergy treatment and undocumented doubts leave very dangerous potential exposed.
The NORD MAC, who evaluate proposals and makes the final acceptation of candidates is VERY experienced in dealing with rare disorders, they have faced conundrums (mysteries, challenges) far more complex than POIS. They focus on a methodology to positively determine what is going on. On some cases this may not mean an immanent solution, but a solid definition and a certain starting point.
We are probably far enough along (and I am sure they will see MOST of our findings) that a good starting point may well be more evident. BUT it is so important to know "what is going on". If we knew that now, we would have on tenth the problems we do now.
So no approach is closed, as none is assured. Certainly WE cannot make that decision, nor would want to. We cannot take the responsibility to decide what is the right path for research, for all we think we know. That's why we are paying the RIGHT people to do it.
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If anybody make an ANAPHYLAXIS someday, we'll be fixed about the allergy theory ; All we got today is skin reactions(my doc said maybe 70% of the normal population have a skin reaction to their own sperm that should'nt be injected in the skin) and few feelings of recovery ; Is there any way to monitor an allergic reaction without going as far as Anaphylaxis ?
For three reason, I think Allergy theory still could be the good one :
1.Several testimonies and notably the Animus story
2.Only theory wich fit with the fact that lot of us got symptoms just after arousal(sperm is not release but some components of the semen are : maybe we should look at them)
3. Since I know about Pois, I've been dramaticly reduce my O frequency...and I think the symptoms got worse....it's like having orgasm frequently was a kind of "auto desens" and the fact of avoiding them made me more sensitive.
Any ways, i'm pretty sure even if the cause is allergic there is consequences in hormones and neurotransmitters ; symptoms and cure reactions point that
It's pretty frustrating that after 10 years of investigation we are not even sure about the beginning of an explanation...
This will probably make yell people here but i'll have no problem to take the risk to definitly valid or invalid the allergy theory ; I'm pretty sure, if we got (under strong medical supervision) raising dose of semen and monitor the reactions(histamine level, physical reactions, etc) we'll have some tangible result, a real proof and something to start with....or we'll focus research in something else
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If anybody make an ANAPHYLAXIS someday, we'll be fixed about the allergy theory ; All we got today is skin reactions(my doc said maybe 70% of the normal population have a skin reaction to their own sperm that should'nt be injected in the skin) and few feelings of recovery ; Is there any way to monitor an allergic reaction without going as far as Anaphylaxis ?
For three reason, I think Allergy theory still could be the good one :
1.Several testimonies and notably the Animus story
2.Only theory wich fit with the fact that lot of us got symptoms just after arousal(sperm is not release but some components of the semen are : maybe we should look at them)
3. Since I know about Pois, I've been dramaticly reduce my O frequency...and I think the symptoms got worse....it's like having orgasm frequently was a kind of "auto desens" and the fact of avoiding them made me more sensitive.
Any ways, i'm pretty sure even if the cause is allergic there is consequences in hormones and neurotransmitters ; symptoms and cure reactions point that
It's pretty frustrating that after 10 years of investigation we are not even sure about the beginning of an explanation...
This will probably make yell people here but i'll have no problem to take the risk to definitly valid or invalid the allergy theory ; I'm pretty sure, if we got (under strong medical supervision) raising dose of semen and monitor the reactions(histamine level, physical reactions, etc) we'll have some tangible result, a real proof and something to start with....or we'll focus research in something else
Histamine is released anyway as part of an O by mast cells in the genitals. It makes perfect sense why animus solution worked (even if it's very harsh) and that doesn't require anybody to have any allergy to seminal fluid.
I've seen posts saying that people have tried anti-histamines and they don't work on POIS. There are different kinds of histamine receptor and they could each cause different POIS symptoms. Rashes, itches, heart palpitations, stomach upset and serious cognition problems can all be caused by sets of H1, H2 and H3 histamine receptors.
Anti-histamines are designed to be receptor specific and modern anti-histamines are designed to have minimal crossing of the blood brain barrier (although some papers suggest it still happens). Therefore, taking zirtek or similar has NO CHANCE of making the cognitive symptoms of POIS go away and doesn't disprove the histamine theory at all.
It's entirely possible that some POIS sufferers have an allergic reaction to seminal fluid but we've no evidence it's actually taking place and how would we separate that from the normal histamine release at an orgasm?
For instance, I experience NO RASH WHATSOEVER on the point of my penis that has the most exposure to sperm whether I clean it well after an O or not. None.
Have any gay POIS sufferers shown allergy to their partner's sperm? I'm really interested to know.
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Thank you, LAPOISSE and kurtosis!
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If anybody make an ANAPHYLAXIS someday, we'll be fixed about the allergy theory ; All we got today is skin reactions(my doc said maybe 70% of the normal population have a skin reaction to their own sperm that should'nt be injected in the skin) and few feelings of recovery ; Is there any way to monitor an allergic reaction without going as far as Anaphylaxis ?
For three reason, I think Allergy theory still could be the good one :
1.Several testimonies and notably the Animus story
2.Only theory wich fit with the fact that lot of us got symptoms just after arousal(sperm is not release but some components of the semen are : maybe we should look at them)
3. Since I know about Pois, I've been dramaticly reduce my O frequency...and I think the symptoms got worse....it's like having orgasm frequently was a kind of "auto desens" and the fact of avoiding them made me more sensitive.
Any ways, i'm pretty sure even if the cause is allergic there is consequences in hormones and neurotransmitters ; symptoms and cure reactions point that
It's pretty frustrating that after 10 years of investigation we are not even sure about the beginning of an explanation...
This will probably make yell people here but i'll have no problem to take the risk to definitly valid or invalid the allergy theory ; I'm pretty sure, if we got (under strong medical supervision) raising dose of semen and monitor the reactions(histamine level, physical reactions, etc) we'll have some tangible result, a real proof and something to start with....or we'll focus research in something else
Histamine is released anyway as part of an O by mast cells in the genitals. It makes perfect sense why animus solution worked (even if it's very harsh) and that doesn't require anybody to have any allergy to seminal fluid.
I've seen posts saying that people have tried anti-histamines and they don't work on POIS. There are different kinds of histamine receptor and they could each cause different POIS symptoms. Rashes, itches, heart palpitations, stomach upset and serious cognition problems can all be caused by sets of H1, H2 and H3 histamine receptors.
Anti-histamines are designed to be receptor specific and modern anti-histamines are designed to have minimal crossing of the blood brain barrier (although some papers suggest it still happens). Therefore, taking zirtek or similar has NO CHANCE of making the cognitive symptoms of POIS go away and doesn't disprove the histamine theory at all.
It's entirely possible that some POIS sufferers have an allergic reaction to seminal fluid but we've no evidence it's actually taking place and how would we separate that from the normal histamine release at an orgasm?
For instance, I experience NO RASH WHATSOEVER on the point of my penis that has the most exposure to sperm whether I clean it well after an O or not. None.
Have any gay POIS sufferers shown allergy to their partner's sperm? I'm really interested to know.
how does he doing the operation reduce his histamine. He still has normal orgasm the only different is way less semen. wont his body still recruit mast cell. Are you saying semen naturally cause histamine release.
a point in support of high histamine: histamine is key to orgasm and can be behind premature ejaculation and alot of us have premajucation.
I can orgasm five times straight and the sixth will still orgasm very quick.
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While I think it's important to ensure that people considering desensitization are fully aware of the risks (and this is ESPECIALLY TRUE with SLIT and other procedures not administered under the supervision of a physician) this post shades heavily into fearmongering and putting people off of the only real technique that we've seen sustained success from. It, in many cases, OVERSTATES the risk of professionally administered desens, and in some implies risks that there's little or no scientific support for. There are a number of us who have benefitted from desens and have shared our experiences on this board. Are our experiences (and the 50% reduction in my symptoms) "fiction" daveman?
How is this approach at all productive? What we should be doing is something that you and Demo are usually quite keen to do (but have refrained from doing in this case -- instead substituting your expert medical opinions): encourage people to have frank discussions with their doctors regarding their treatment and the (real, rather than fabricated and sensationalistic) risks associated with it.
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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
Do you know how many people die because of a an anti flu injection? People die because of NSAID. People die because of anti biotics.
Make sure you are in good hands. And that they can go the emmergency room in the hospital.
Desens is done a long time ago. Also for people with pollen allergy. And there is a risk too. With every medication or injection there is a risk.
If someone doesn't want any risk, he or she must do nothing. If he got the flu, do nothing.
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While I think it's important to ensure that people considering desensitization are fully aware of the risks (and this is ESPECIALLY TRUE with SLIT and other procedures not administered under the supervision of a physician) this post shades heavily into fearmongering and putting people off of the only real technique that we've seen sustained success from. It, in many cases, OVERSTATES the risk of professionally administered desens, and in some implies risks that there's little or no scientific support for. There are a number of us who have benefitted from desens and have shared our experiences on this board. Are our experiences (and the 50% reduction in my symptoms) "fiction" daveman?
How is this approach at all productive? What we should be doing is something that you and Demo are usually quite keen to do (but have refrained from doing in this case -- instead substituting your expert medical opinions): encourage people to have frank discussions with their doctors regarding their treatment and the (real, rather than fabricated and sensationalistic) risks associated with it.
I really do beg to differ on a number of points:
You say desensitization is "the only real technique that we've seen sustained success from". This is NOT true. First of all, for some reason, "the failures of desensitization are highly guarded", we don't see the REAL figures. If it works we hear about it, if it doesn't we don't. An exception to this are the numbers seen through our own members' programs, which unfortunately are still in early testing. Second there is sustained success from other methods with equal or better performance.
You say that we OVERSTATE the risk of professionally administered desens. NO. We STATE CLEARLY that the risk of UNsupervised administration is VERY dangerous. As far as professionally administered desensitization, we are saying that it is being applied without taking into consideration the standard practices normally applied in these cases. Many allergists won't do semen desensitization because they feel that the papers don't guarantee the the testing of critical pre-conditions, that one is or is not allergic to their semen. Many, I would even go so far as to say the majority of professionals can not accept that a reaction to the skin-prick IS evidence that we are allergic to semen. This is extremely important! And if you think that it is fear-mongering, then I'm sorry, you don't understand the importance of this point! IF you are NOT allergic to an allergen, you are only creating a greater problem by introducing it into the system on the other side of the blood barrier. You don't have to be a professional nor expert to know that.
You ask, "There are a number of us who have benefited from desens and have shared our experiences on this board. Are our experiences (and the 50% reduction in my symptoms) "fiction" daveman?"
We have provided this forum to share our experiences. I think that ONE of the GREAT benefits of such is that we get all the numbers. Perhaps we can't control our testing as well as the professionals, perhaps our results may be misleading for that reason, but we SEE everything. We see the successes and the failures. One without the other is of NO value, or at least of little value.
We can compare numbers, on various fronts, we have successes, which are balanced with faiilures. Desens, niacin, TRT among the most promising, none can show complete or even adequate results for all.
I know that those who are serious about testing desens, either through a doctor or on their own, will do so, with or without us. An advantage of this forum is that we can have one thread of several that talks about the down side, the rest can carry on offering their progress to the members without the negative mixed in on top of their input. I am honestly not unlike you, I spend a lot of my time to this cause, in the hope that we can find a solution. If the solution is desens, then so be it and let it shine through.
The good thing is that we are beyond the $24,000 mark thanks to the sponsor and all of you. If desens is real, if all that's required is to isolate "THE" allergen and devise a proper test, then research will show that. Then we can all go happily for our treatments. But we won't know WHAT our problem is until we do the research. We just won't!
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If anybody make an ANAPHYLAXIS someday, we'll be fixed about the allergy theory ; All we got today is skin reactions(my doc said maybe 70% of the normal population have a skin reaction to their own sperm that should'nt be injected in the skin) and few feelings of recovery ; Is there any way to monitor an allergic reaction without going as far as Anaphylaxis ?
For three reason, I think Allergy theory still could be the good one :
1.Several testimonies and notably the Animus story
2.Only theory wich fit with the fact that lot of us got symptoms just after arousal(sperm is not release but some components of the semen are : maybe we should look at them)
3. Since I know about Pois, I've been dramaticly reduce my O frequency...and I think the symptoms got worse....it's like having orgasm frequently was a kind of "auto desens" and the fact of avoiding them made me more sensitive.
Any ways, i'm pretty sure even if the cause is allergic there is consequences in hormones and neurotransmitters ; symptoms and cure reactions point that
It's pretty frustrating that after 10 years of investigation we are not even sure about the beginning of an explanation...
This will probably make yell people here but i'll have no problem to take the risk to definitly valid or invalid the allergy theory ; I'm pretty sure, if we got (under strong medical supervision) raising dose of semen and monitor the reactions(histamine level, physical reactions, etc) we'll have some tangible result, a real proof and something to start with....or we'll focus research in something else
Histamine is released anyway as part of an O by mast cells in the genitals. It makes perfect sense why animus solution worked (even if it's very harsh) and that doesn't require anybody to have any allergy to seminal fluid.
I've seen posts saying that people have tried anti-histamines and they don't work on POIS. There are different kinds of histamine receptor and they could each cause different POIS symptoms. Rashes, itches, heart palpitations, stomach upset and serious cognition problems can all be caused by sets of H1, H2 and H3 histamine receptors.
Anti-histamines are designed to be receptor specific and modern anti-histamines are designed to have minimal crossing of the blood brain barrier (although some papers suggest it still happens). Therefore, taking zirtek or similar has NO CHANCE of making the cognitive symptoms of POIS go away and doesn't disprove the histamine theory at all.
It's entirely possible that some POIS sufferers have an allergic reaction to seminal fluid but we've no evidence it's actually taking place and how would we separate that from the normal histamine release at an orgasm?
For instance, I experience NO RASH WHATSOEVER on the point of my penis that has the most exposure to sperm whether I clean it well after an O or not. None.
Have any gay POIS sufferers shown allergy to their partner's sperm? I'm really interested to know.
how does he doing the operation reduce his histamine. He still has normal orgasm the only different is way less semen. wont his body still recruit mast cell. Are you saying semen naturally cause histamine release.
a point in support of high histamine: histamine is key to orgasm and can be behind premature ejaculation and alot of us have premajucation.
I can orgasm five times straight and the sixth will still orgasm very quick.
Because even a high histamine person adjusts their h3 auto receptor levels such that they remain alert but with a rush of histamine from an O and inadequate clearing of that histamine in the brain (perhaps caused by a HNMT mutation) the h3 feedback mechanism would move into slow the synthesis of other neurotransmitters and try to protect the body.
Some HNMT mutations are known but it's early days for their study. Here's a paper discussing 2 mutations and a possible connection to asthma. There's also a theorised connection to schizophrenia. http://www.csupharmacol.com/db/allpaper/117.pdf
Carl Pfeiffer would find it funny, I'm sure, to see that a medical community which scoffed at his treatments are now designing drugs that act on H3 receptors to treat ADHD and studying methylation gene mutations (HNMT, COMT etc.) and their affect on psychiatric illnesses.
Mast cell release of histamine does not require an allergy to seminal fluid. It appears it's related to the actions in the tissue that permit an erection and the final orgasm.
http://www.ncbi.nlm.nih.gov/pubmed/7850330
For example, there are tests that show that when someone is given a h2 antagonist like Zantac, they cannot get an erection. Rantidine/Zantac has the side effect of libido loss and erectile dysfunction. http://www.wisegeek.com/what-are-h2-blockers.htm
But that's not a great solution either :)
If exogenous histamine is injected into their penile tissue of someone taking a h2 blocker like rantidine it binds to h2 receptors and supports the muscle contraction. It's impossible to have an erection without raising histamine but there's less released during an erection then when someone has an O which releases seminal fluid. Or that's my understanding of it at least.
Yes it's very unusual that you can have so many O's as to do that you need to be able to sustain a lot of erections. I had 6 in one day during my early 20s. The girl I was going out with that the time was a combination of impressed and shocked but it's not normal. Now, I believe it encouraged the promiscuous behaviour that I described earlier. With all that histamine flowing, the desire to have an O is intense and there were times I could think about little else.
If the high histamine theory is correct then POIS sufferers who are not on medication which reduce libido (SSRI's perhaps) would have a high libido and would find it very very difficult to stop having orgasms. Indeed, they'd be quick to become aroused which would make POIS even worse as they'd be more inclined to orgasm than most people.
Read this http://www.gilbertssyndrome.com/allergies.php from a person with gilbert syndrome and resulting high histamine and note that they experience some allergy symptoms upon orgasm. We are not the only people suffering allergy problems due to orgasms.
I also have an idea that this may explain why the original ZMA tests on athletes worked better than subsequent lab trials on increasing testosterone. The theory is that most athletes are undermethylators and have high histamine (but they must also have efficient histamine clearing AND steroidogenesis). The latter 2 explains why we're not all winning medals at the olympics :) ZMA contains methionine which when administered at night may help the body reduce histamine levels, reduce cortisol steal and increase testosterone (in tandem with b6 and zinc supplementation of course). So that's why I think the stuff works better on high histamine types than members of the normal population. It may be why JFerr's testosterone levels nearly doubled when taking the stuff. I have no idea why they fell...
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With every medication or injection there is a risk.
Risks with any treatment? True, but with POIS - desens, it's death. I do not see this potential danger for any other POIS treatment.
I use TRT for POIS for 3 years now. Successfully. But I feel it's responsible and necessary though to tell people that they might lose their sperm count and never have children.
Fertility risks and more are there for TRT - and with almost any treatment. But not the risk of death.
I would love to see longterm desensitization success!
But I would like to see some REAL "science" that supports this desens "theory/hypothesis"
So it's up to the desens POIS patient to
1) understand the desensitization "theory" ("theory" in quotes because there is none per normal medical standards - just like TRT, just like niacin - we are all working with such little understanding of POIS)
2) use an epi-pen. Especially for orgasm outside a hospital setting.
3) understand the dangers. There are two: death and new autoimmune probs.
4) can you wait till NORD starts research and see what the world's top physician-researchers discover about POIS?
But...I really understand "No More POIS!" thinking.
I was lucky with TRT! Daveman was lucky with niacin! That's where we all are, in my opinion.
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If the high histamine theory is correct then POIS sufferers who are not on medication which reduce libido (SSRI's perhaps) would have a high libido and would find it very very difficult to stop having orgasms. Indeed, they'd be quick to become aroused which would make POIS even worse as they'd be more inclined to orgasm than most people.
I'm not on any medication but my libido is very low. you already suggested it could be because of high prolactin (that actually was a bit high on my hormonal test results). So i'll keep it monitored.
But i want to ask you one think.
I'm getting convinced that i could be an histadelic person because i have many symptoms, except low libido and the fact that i'm not a high achiever (but i think POIS itself had a big influence on that).
anyways, i have been reading at some forums where people is sharing information about remedies etc...
many of them suggest a simple way to self test histadelia: it consists on taking 50mg of niacin, if you get a flush then it is a good indicator of histamine levels. as per those forum, the higher is the amount you need to get a flush, the lower is the amount of histamine in the blood.
well, i actually can get a flush with only 50mg.
does it make sense for you?
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If the high histamine theory is correct then POIS sufferers who are not on medication which reduce libido (SSRI's perhaps) would have a high libido and would find it very very difficult to stop having orgasms. Indeed, they'd be quick to become aroused which would make POIS even worse as they'd be more inclined to orgasm than most people.
I'm not on any medication but my libido is very low. you already suggested it could be because of high prolactin (that actually was a bit high on my hormonal test results). So i'll keep it monitored.
But i want to ask you one think.
I'm getting convinced that i could be an histadelic person because i have many symptoms, except low libido and the fact that i'm not a high achiever (but i think POIS itself had a big influence on that).
anyways, i have been reading at some forums where people is sharing information about remedies etc...
many of them suggest a simple way to self test histadelia: it consists on taking 50mg of niacin, if you get a flush then it is a good indicator of histamine levels. as per those forum, the higher is the amount you need to get a flush, the lower is the amount of histamine in the blood.
well, i actually can get a flush with only 50mg.
does it make sense for you?
That's interesting.
Yes, it does make sense. 50mg to get a flush is low. Of course, when people take it for a while, then their tolerance increases. In a way, there may be some desens going on there also :)
One thing that also reduces libido is depression. Did you always have a low libido and what does that mean to you? Do you feel disinclined to have sex or O's because of POIS or just because of disinterest? It's complicated.
I wonder if Demografx, for instance, always felt symptoms of hypogonadism or if that's something that just happened BECAUSE of POIS. Immunological problems can reduce testosterone levels.
-
While I think it's important to ensure that people considering desensitization are fully aware of the risks (and this is ESPECIALLY TRUE with SLIT and other procedures not administered under the supervision of a physician) this post shades heavily into fearmongering and putting people off of the only real technique that we've seen sustained success from. It, in many cases, OVERSTATES the risk of professionally administered desens, and in some implies risks that there's little or no scientific support for. There are a number of us who have benefitted from desens and have shared our experiences on this board. Are our experiences (and the 50% reduction in my symptoms) "fiction" daveman?
How is this approach at all productive? What we should be doing is something that you and Demo are usually quite keen to do (but have refrained from doing in this case -- instead substituting your expert medical opinions): encourage people to have frank discussions with their doctors regarding their treatment and the (real, rather than fabricated and sensationalistic) risks associated with it.
Egordon, many thanks for your well thought out commentary!
As a moderator, I strive to look for overall balance on any topic.
I also feel protective of new, possibly medically naive members, and also of the silent readers.
I think we have uncovered more pros and cons than ever before. With this thread. Without ad hominem arguments. And if Daveman and I introduced any negativity, it was intended to balance some of the current experiments with "expert medical opinion" as you described me and Daveman. No, we don't think of ourselves in any way, shape, or form as... medical experts as you state. But, as Daveman wrote, our information also comes from well-informed immunologists and other medical professionals. As yours does I'm sure.
I am not concerned about highly qualified physicians performing these procedures. But, as you know that is not always the case! My feeling is that the forum has a responsibility to arm every "seeker of a POIS cure" with, not fearmongering, as you suggest that Daveman and I do, but medical facts as much as successful experiments.
Please take a look at the whole forum's activity on desensitization. Our few comments hardly overwhelm the desensitization community in terms of FAIR AND ACCURATE coverage.
We all want the same thing. In my opinion.
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Regarding the whole "high achiever" thing. It's not that straightforward. The histadelic person would generally have a family where there are high achievers and feel a desire to achieve themselves. The point is that you would feel you should be achieving or being more successful rather than accepting POIS.
That's really important. There are people here who are relatively high achievers (by most standards) yet they still want to achieve more. That's interesting and suggests there's an aspect of the POIS personality type. The desire to do better and the understanding that things are wrong.
A normal or low histamine person may not give a crap that their cognitive abilities are so variable. That's an interesting thing to note.
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If the high histamine theory is correct then POIS sufferers who are not on medication which reduce libido (SSRI's perhaps) would have a high libido and would find it very very difficult to stop having orgasms. Indeed, they'd be quick to become aroused which would make POIS even worse as they'd be more inclined to orgasm than most people.
I'm not on any medication but my libido is very low. you already suggested it could be because of high prolactin (that actually was a bit high on my hormonal test results). So i'll keep it monitored.
But i want to ask you one think.
I'm getting convinced that i could be an histadelic person because i have many symptoms, except low libido and the fact that i'm not a high achiever (but i think POIS itself had a big influence on that).
anyways, i have been reading at some forums where people is sharing information about remedies etc...
many of them suggest a simple way to self test histadelia: it consists on taking 50mg of niacin, if you get a flush then it is a good indicator of histamine levels. as per those forum, the higher is the amount you need to get a flush, the lower is the amount of histamine in the blood.
well, i actually can get a flush with only 50mg.
does it make sense for you?
That's interesting.
Yes, it does make sense. 50mg to get a flush is low. Of course, when people take it for a while, then their tolerance increases. In a way, there may be some desens going on there also :)
One thing that also reduces libido is depression. Did you always have a low libido and what does that mean to you? Do you feel disinclined to have sex or O's because of POIS or just because of disinterest? It's complicated.
I wonder if Demografx, for instance, always felt symptoms of hypogonadism or if that's something that just happened BECAUSE of POIS. Immunological problems can reduce testosterone levels.
I think you have to consider the stomach first. What I mean is, In the morning after all night without eating and just waking up I can get a flush with 50. But even 4 hrs after a good barbeque and beer, I barely get a flush, if at all, with 400mg.
That has something to do with the liver I think doesn't it? I don't think histamine levels are involved there. At least, if you want to test for histamine, I imagine you would have to neutralize other factors and test at times that are most reflective of histamine condition.
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True but if someone can flush on 50mg of niacin with a full stomach it may indicate high histamine levels.
Primarily, food affects absorption.
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I've tried it under the tongue for times when I haven't fasted as long as I'd like, but very little difference. Faster maybe, 5 min instead of 15 to see a result.
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One thing that also reduces libido is depression. Did you always have a low libido and what does that mean to you? Do you feel disinclined to have sex or O's because of POIS or just because of disinterest? It's complicated.
I actually am disinclined because of POIS. Only few times I had a good libido.
Last time was when for an acute gastritis I couldn't eat almost anything during some weeks.
when I had an O I had a high libido and and felt POIS free. this for me confirmes histamine theory.if I'm right each food we eat induces a histamine reaction, some more than other. so, eating small amount of food for a long time should help the methylation process. As soon I came back on a normal diet issues appeared again
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If the high histamine theory is correct then POIS sufferers who are not on medication which reduce libido (SSRI's perhaps) would have a high libido and would find it very very difficult to stop having orgasms. Indeed, they'd be quick to become aroused which would make POIS even worse as they'd be more inclined to orgasm than most people.
I'm not on any medication but my libido is very low. you already suggested it could be because of high prolactin (that actually was a bit high on my hormonal test results). So i'll keep it monitored.
But i want to ask you one think.
I'm getting convinced that i could be an histadelic person because i have many symptoms, except low libido and the fact that i'm not a high achiever (but i think POIS itself had a big influence on that).
anyways, i have been reading at some forums where people is sharing information about remedies etc...
many of them suggest a simple way to self test histadelia: it consists on taking 50mg of niacin, if you get a flush then it is a good indicator of histamine levels. as per those forum, the higher is the amount you need to get a flush, the lower is the amount of histamine in the blood.
well, i actually can get a flush with only 50mg.
does it make sense for you?
That's interesting.
Yes, it does make sense. 50mg to get a flush is low. Of course, when people take it for a while, then their tolerance increases. In a way, there may be some desens going on there also :)
One thing that also reduces libido is depression. Did you always have a low libido and what does that mean to you? Do you feel disinclined to have sex or O's because of POIS or just because of disinterest? It's complicated.
I wonder if Demografx, for instance, always felt symptoms of hypogonadism or if that's something that just happened BECAUSE of POIS. Immunological problems can reduce testosterone levels.
I think you have to consider the stomach first. What I mean is, In the morning after all night without eating and just waking up I can get a flush with 50. But even 4 hrs after a good barbeque and beer, I barely get a flush, if at all, with 400mg.
That has something to do with the liver I think doesn't it? I don't think histamine levels are involved there. At least, if you want to test for histamine, I imagine you would have to neutralize other factors and test at times that are most reflective of histamine condition.
maybe you are right , but i still can get a good flush with only 100mg even inmediately after eating a lot.
it would be better investigatiing about the histamine level in blood, that would be more accurated
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Will regular anti-histamines help or how will we go about reducing our histamine levels if this is the case for POIS?
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Will regular anti-histamines help or how will we go about reducing our histamine levels if this is the case for POIS?
Unfortunately not. Given the range of cognitive symptoms we experience, it seems doubtful that the only histamine receptors triggered are H1 so most of the histamines you'd buy in a chemist would be useless.
This needs more research. The ideal would be a h3 and h1 inverse agonist but I can't find any that are on the market. The closest I found was a vertigo medication which is a h3 antagonist but a h1 agonist.
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Just antihistamines with mast cell stabilizing properties like ketitofen could help.
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Will regular anti-histamines help or how will we go about reducing our histamine levels if this is the case for POIS?
Unfortunately not. Given the range of cognitive symptoms we experience, it seems doubtful that the only histamine receptors triggered are H1 so most of the histamines you'd buy in a chemist would be useless.
This needs more research. The ideal would be a h3 and h1 inverse agonist but I can't find any that are on the market. The closest I found was a vertigo medication which is a h3 antagonist but a h1 agonist.
Yesterday was weird. I was on the border of an anxiety attack all day. It was day 5, however after a reasonable niacin session. I had to take 400mg to get a flush which was light. Day 1 was fairly rough, but strangely I did a lot of heavy work that day and it seemed to actually lessen the POIS. I don't know, it was as though the work seemed to activate something from the niacin effect. Normally exercise makes my POIS worse and I can't even do the amount that I did that day.
But getting back. The rest of the session has been good, little to no POIS after a good sleep the night of day 1.
Except for this day 5 anxiety. To make things worse, I didn't have my Xanax with me, that I usually have around "just in case". I tried to calm myself, and never really entered "an attack", but was feeling quite uncomfortable.
I started thinking about anti-histamines. Perhaps I was having a histamine surge or something. So I went to look for the equivalent of Benadryl (here in Chile) HA. Couldn't find it, but found loratadina. I am very cautious, certainly didn't want to make things worse, so just took a half dose.
It worked! Didn't feel any other effects, drowsiness, nothing, but the anxiety just went away within about half an hour.
Who knows, maybe even placebo!
Loratadina works on the H1. Who knows. I know anti-histamines have never worked for me with the more physical symptoms, but somehow something worked here.
-
Will regular anti-histamines help or how will we go about reducing our histamine levels if this is the case for POIS?
Unfortunately not. Given the range of cognitive symptoms we experience, it seems doubtful that the only histamine receptors triggered are H1 so most of the histamines you'd buy in a chemist would be useless.
This needs more research. The ideal would be a h3 and h1 inverse agonist but I can't find any that are on the market. The closest I found was a vertigo medication which is a h3 antagonist but a h1 agonist.
Yesterday was weird. I was on the border of an anxiety attack all day. It was day 5, however after a reasonable niacin session. I had to take 400mg to get a flush which was light. Day 1 was fairly rough, but strangely I did a lot of heavy work that day and it seemed to actually lessen the POIS. I don't know, it was as though the work seemed to activate something from the niacin effect. Normally exercise makes my POIS worse and I can't even do the amount that I did that day.
But getting back. The rest of the session has been good, little to no POIS after a good sleep the night of day 1.
Except for this day 5 anxiety. To make things worse, I didn't have my Xanax with me, that I usually have around "just in case". I tried to calm myself, and never really entered "an attack", but was feeling quite uncomfortable.
I started thinking about anti-histamines. Perhaps I was having a histamine surge or something. So I went to look for the equivalent of Benadryl (here in Chile) HA. Couldn't find it, but found loratadina. I am very cautious, certainly didn't want to make things worse, so just took a half dose.
It worked! Didn't feel any other effects, drowsiness, nothing, but the anxiety just went away within about half an hour.
Who knows, maybe even placebo!
Loratadina works on the H1. Who knows. I know anti-histamines have never worked for me with the more physical symptoms, but somehow something worked here.
Well, you've h1 receptors all around your body but I still feel that most of the cognitive symptoms are coming from h3. However, inflammation which isn't fighting a problematic allergen is just bad inflammation. So I've nothing against taking anti-histamines but, any my Spanish is rubbish, doesn't Loratadina also contain pseudo ephedrine. It's not quite an epi-pen (similar idea) but I'm guessing it's a combination of h1 antagonism and the PE that helps you overcome the symptoms.
-
Interesting theory about H3 receptors ; if POIS is an allergy, it's definitely involves H3
How do we confirm that ? I've just read there is no anti H3 commercialized in my country..what about the vertigo drug ? Better than nothing ?
-
Interesting theory about H3 receptors ; if POIS is an allergy, it's definitely involves H3
How do we confirm that ? I've just read there is no anti H3 commercialized in my country..what about the vertigo drug ? Better than nothing ?
It might be but you'd have to take it under medical supervision. It agonises h1 receptors. Most anti-histamines are h1 inverse agonists so I'd be worried that taking an agonist before an O would make POIS symptoms worse. A possibility is taking betahistine after a h1 antagonist but that sounds risky also.
Other possibilities are mast cell stabilisers. These may reduce the overall levels of histamine and are used to treat some high histamine conditions. This could be a safer option for the moment.
I'm taking methionine to reduce histamine. It's not perfect but I sure feel a lot better. Oddly methionine and D-Ribose seems to work a bit better for me than SAMe. SAMe is good though but it kicks in fast and I feel my allergies returning in a few hours. I've also noticed that the now b vitamins I take has TMG / Betaine which is also used in methylation reactions.
Until h3 inverse agonists with either no or inverse agonistic effects on h1 and h2 are available then there's no "silver bullet" and this assumes that this theory is correct. I have a hunch that h3 inverse agonists will prove to be successful ADHD medications as I've heard some people say SAMe and methionine helped with their ADHD, implying there may be a common histamine connection to our problem and some sufferers of attention disorders. Pitolisant (another H3 inverse agonist) has shown some efficacy in studies to treat schizophrenia. Similarly with http://en.wikipedia.org/wiki/ABT-239
this class of drugs appears to have a nootropic affect, stimulating memory, learning, concentration and increasing intelligence.
This is an emerging area in neuroscience research. This overview paper is as recent as 2004 http://learnmem.cshlp.org/content/11/1/1.full
Remember that drugs can have a very long gestation period. Pharmaceutical companies don't rush them out on the market.
Clinical trials are showing that dosages are very important. In our brains, the h3 receptor triggered reduction of neurotransmitter production is being done by the body for safety reasons. Accepting that some people (POIS sufferers perhaps) could have a malfunction, most people would not want their h3 receptors antagonised on a permeant basis. It could prove overstimulating, affect cardiac rhythms etc. It may be safer than amphetamines but these will still be powerful drugs.
Anyway, it's a research area for NORD to consider.
-
Will regular anti-histamines help or how will we go about reducing our histamine levels if this is the case for POIS?
Unfortunately not. Given the range of cognitive symptoms we experience, it seems doubtful that the only histamine receptors triggered are H1 so most of the histamines you'd buy in a chemist would be useless.
This needs more research. The ideal would be a h3 and h1 inverse agonist but I can't find any that are on the market. The closest I found was a vertigo medication which is a h3 antagonist but a h1 agonist.
Yesterday was weird. I was on the border of an anxiety attack all day. It was day 5, however after a reasonable niacin session. I had to take 400mg to get a flush which was light. Day 1 was fairly rough, but strangely I did a lot of heavy work that day and it seemed to actually lessen the POIS. I don't know, it was as though the work seemed to activate something from the niacin effect. Normally exercise makes my POIS worse and I can't even do the amount that I did that day.
But getting back. The rest of the session has been good, little to no POIS after a good sleep the night of day 1.
Except for this day 5 anxiety. To make things worse, I didn't have my Xanax with me, that I usually have around "just in case". I tried to calm myself, and never really entered "an attack", but was feeling quite uncomfortable.
I started thinking about anti-histamines. Perhaps I was having a histamine surge or something. So I went to look for the equivalent of Benadryl (here in Chile) HA. Couldn't find it, but found loratadina. I am very cautious, certainly didn't want to make things worse, so just took a half dose.
It worked! Didn't feel any other effects, drowsiness, nothing, but the anxiety just went away within about half an hour.
Who knows, maybe even placebo!
Loratadina works on the H1. Who knows. I know anti-histamines have never worked for me with the more physical symptoms, but somehow something worked here.
Well, you've h1 receptors all around your body but I still feel that most of the cognitive symptoms are coming from h3. However, inflammation which isn't fighting a problematic allergen is just bad inflammation. So I've nothing against taking anti-histamines but, any my Spanish is rubbish, doesn't Loratadina also contain pseudo ephedrine. It's not quite an epi-pen (similar idea) but I'm guessing it's a combination of h1 antagonism and the PE that helps you overcome the symptoms.
No in this case, the produce has just loratidina. Nothing else. I wanted to avoid any coffeine or psuedoephidrine.
I think loratidina is a compound in itself, but some brands mix the pseudoephidrine in with it.
The brand name is called Alledryl.
It might have been placebo.... but I guess the important is that it worked. I'll try more testing, although I don't have
lots of these types of problems, just every once in a while.
I'll see what I can find in H3... I'm in Chile after all.
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Thanks Kurtosis,
I need to make un update to my doc who is trying to have one of his colegue setting up some research protocol.
Does the H3 reaction theory fits with (i) the Niacin partial cure a lot of us experienced ? (ii) the TRT cure ? I understand that thoose 2 medications seems to have an effect on the causes when all others are treating symptoms (actualy not really s?re about that)
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Thanks Kurtosis,
I need to make un update to my doc who is trying to have one of his colegue setting up some research protocol.
Does the H3 reaction theory fits with (i) the Niacin partial cure a lot of us experienced ? (ii) the TRT cure ? I understand that thoose 2 medications seems to have an effect on the causes when all others are treating symptoms (actualy not really s?re about that)
Yes.
TRT appears to reduce histamine levels in mice studies. It's a potent natural anti-inflammatory.
Niacinamide appears to be a mast cell stabiliser. Niacin appears to cause a flush which releases histamine but the greatest increase is in prostaglandins. It's possible that niacin flush either reduces the net amount of histamine that can reach the brain after an O or the prostaglandin (PGD2) that's released may reduce the ability of mast cells to release as much histamine during an O. The last bit is quite theoretical and I'm having difficulty finding papers to verify it. There's some linked elsewhere in the forum. No time to find them right now.
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Thanks Kurtosis,
I need to make un update to my doc who is trying to have one of his colegue setting up some research protocol.
Does the H3 reaction theory fits with (i) the Niacin partial cure a lot of us experienced ? (ii) the TRT cure ? I understand that thoose 2 medications seems to have an effect on the causes when all others are treating symptoms (actualy not really s?re about that)
Yes.
TRT appears to reduce histamine levels in mice studies. It's a potent natural anti-inflammatory.
Niacinamide appears to be a mast cell stabiliser. Niacin appears to cause a flush which releases histamine but the greatest increase is in prostaglandins. It's possible that niacin flush either reduces the net amount of histamine that can reach the brain after an O or the prostaglandin (PGD2) that's released may reduce the ability of mast cells to release as much histamine during an O. The last bit is quite theoretical and I'm having difficulty finding papers to verify it. There's some linked elsewhere in the forum. No time to find them right now.
I'm not a biology expert, doh, but with niacin,
I've always had the feeling that something is done that short
circuits the process that creates the imbalance. So in that case, the later,
and more complicated of the scenarios would seem to apply better:
That niacin either reduces the amount of histamine generated during "O", thereby
not overloading the system or depleting the building blocks, PGD2(?) for
production of dopamine and other elements we need to keep balance. Or it provides
fuel / building blocks to produce the histamine required, without depleting the system.
If it's just a matter of reducing the amount of histamine that reaches the brain during
orgasm, would that have the longer term effect of stopping POIS for the days that follow?
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You may have to take the h3 blocker for more than 1 day but, I believe, that our histamine levels are just too high in general and we can't effectively clear it when it's released. In that case, the h3 blocker taken for a day or so would get over the worst effects.
The other alternative is to reduce histamine production using mast cell stabilisers. Histamine can also be produced by gut bacteria. If that's the problem then treating the bacteria may be the solution. Histamine can be overproduced by the body in conditions such as mastocytosis that I described earlier.
Methionine is one mechanism to help reduce histamine. Another mechanism is increasing DAO levels (as B_Daniel pointed out to me in an email).
There are supplements that can help you do this. B6 and vitamin C help increase it. Synthetic DAO can be taken in products such as DAOSIN / histame which may provide some release.
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Interesting. It seems that progesterone may increase the release of diamine oxidase in pregnant women. Why is this interesting?
Diamine oxidase is also known as histaminase and deactivates histamine in the intestines and kidneys.
In one of Dr Selwyn Dexter's cases, the patient was spontaneously cured during his wife's pregnancy with symptoms worsening after she gave birth. Dexter thought progesterone may be the reason and he gave the patient a small amount of progesterone. He was unsure why it worked however.
I have an idea. Perhaps the progesterone stimulated an increase in the levels of DAO in the patients intestines, thus reducing histamine levels.
Women with DAO synthesis deficits may have problems during pregnancy and it may lead to miscarriage, from the papers I've read. While DAO imbalance may be due to bacterial infection, it may also be due to a genetic problems in synthesising DAO or its consituents. THerefore, it's possible that POIS suffers may have an above average number of miscarriages in their extended family.
High histamine, increases estadiol levels and, therefore, may create hormone imbalance in males.
Increasing methylation may still solve the problem but it could be part of a joint approach involving increasing DAO or taking synthetic DAO to reduce gastric histamine levels.
Why do I favour methylation? Because histamine in the brain isn't cleared by DAO and because (from http://ajcn.nutrition.org/content/85/5/1185.full)
HNMT has a slightly higher affinity for histamine [Michaelis-Menten constant (kM): 6?13 μmol/L] than does DAO (kM: 20 μmol/L)
Also from the same paper
In migraine patients, plasma histamine concentrations have been shown to be elevated both during headache attacks and during symptom-free periods. An increase in the number of brain mast cells is associated with pathologic conditions such as migraine, cluster headache, and multiple sclerosis (64).
However, if your POIS symptoms involve irritable bowel syndrome then supplementary DAO may bring some relief. Olive oil also promotes DAO synthesis apparently.
So, I think that I understand why the b complex doesn't work for everybody. I took it either with ginkgo (which contains a mast cell stabiliser) or methionine (which assists histamine methylation). Taken by itself without either of these some of the b vitamins may increase DAO (and reduce histamine) and others (like folic acid) may actually increase histamine levels.
If you're taking methionine with the b complex and it's still not improving things, I'm not sure what's happening.
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B6 and Vit C increase DAO, do you think this combo would be worth testing:
For histamine breakdown in the intestines:
-DAOsin
-Vit C
-B6
For methyletion:
-NADH
-l-methionine
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kurtosis, based on Dexter's paper, and enthusiasm at the forum for T/P experiments at the time (other papers suggested benefits), I became a forum guinea pig and tried progesterone. After 4 days, I quit, adverse side effects. But the "T/P" theory is still 'out there', perhaps in Pyropeach's compendium at mat780's POIS Info website.
Also, previous progesterone/POIS posts:
https://www.google.com/search?q=progesterone+pois+site:http://thenakedscientists.com&ie=UTF-8&oe=UTF-8&hl=en&client=safari
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Interesting theory about H3 receptors ; if POIS is an allergy, it's definitely involves H3
How do we confirm that ? I've just read there is no anti H3 commercialized in my country..what about the vertigo drug ? Better than nothing ?
It might be but you'd have to take it under medical supervision. It agonises h1 receptors. Most anti-histamines are h1 inverse agonists so I'd be worried that taking an agonist before an O would make POIS symptoms worse. A possibility is taking betahistine after a h1 antagonist but that sounds risky also.
Other possibilities are mast cell stabilisers. These may reduce the overall levels of histamine and are used to treat some high histamine conditions. This could be a safer option for the moment.
I'm taking methionine to reduce histamine. It's not perfect but I sure feel a lot better. Oddly methionine and D-Ribose seems to work a bit better for me than SAMe. SAMe is good though but it kicks in fast and I feel my allergies returning in a few hours. I've also noticed that the now b vitamins I take has TMG / Betaine which is also used in methylation reactions.
Until h3 inverse agonists with either no or inverse agonistic effects on h1 and h2 are available then there's no "silver bullet" and this assumes that this theory is correct. I have a hunch that h3 inverse agonists will prove to be successful ADHD medications as I've heard some people say SAMe and methionine helped with their ADHD, implying there may be a common histamine connection to our problem and some sufferers of attention disorders. Pitolisant (another H3 inverse agonist) has shown some efficacy in studies to treat schizophrenia. Similarly with http://en.wikipedia.org/wiki/ABT-239
this class of drugs appears to have a nootropic affect, stimulating memory, learning, concentration and increasing intelligence.
This is an emerging area in neuroscience research. This overview paper is as recent as 2004 http://learnmem.cshlp.org/content/11/1/1.full
Remember that drugs can have a very long gestation period. Pharmaceutical companies don't rush them out on the market.
Clinical trials are showing that dosages are very important. In our brains, the h3 receptor triggered reduction of neurotransmitter production is being done by the body for safety reasons. Accepting that some people (POIS sufferers perhaps) could have a malfunction, most people would not want their h3 receptors antagonised on a permeant basis. It could prove overstimulating, affect cardiac rhythms etc. It may be safer than amphetamines but these will still be powerful drugs.
Anyway, it's a research area for NORD to consider.
It seems there is some H3 antagonist only :
Ciproxifan
Conessine
Impentamine
Iodophenpropit
There is something I dont understand : apparently H3 antagonist help release of histamine :
Ciproxifan is an extremely potent histamine H3 inverse agonist/antagonist.
The histamine H3 receptor is an inhibitory autoreceptor located on histaminergic nerve terminals, and is believed to be involved in modulating the release of histamine in the brain. Histamine has an excitatory effect in the brain via H1 receptors in the cerebral cortex, and so drugs such as ciproxifan which block the H3 receptor and consequently allow more histamine to be released have an alertness-promoting effect.[1][2][3]
Hi though we were trying to lower the level of histamine release.I probably missed something
-
Interesting theory about H3 receptors ; if POIS is an allergy, it's definitely involves H3
How do we confirm that ? I've just read there is no anti H3 commercialized in my country..what about the vertigo drug ? Better than nothing ?
It might be but you'd have to take it under medical supervision. It agonises h1 receptors. Most anti-histamines are h1 inverse agonists so I'd be worried that taking an agonist before an O would make POIS symptoms worse. A possibility is taking betahistine after a h1 antagonist but that sounds risky also.
Other possibilities are mast cell stabilisers. These may reduce the overall levels of histamine and are used to treat some high histamine conditions. This could be a safer option for the moment.
I'm taking methionine to reduce histamine. It's not perfect but I sure feel a lot better. Oddly methionine and D-Ribose seems to work a bit better for me than SAMe. SAMe is good though but it kicks in fast and I feel my allergies returning in a few hours. I've also noticed that the now b vitamins I take has TMG / Betaine which is also used in methylation reactions.
Until h3 inverse agonists with either no or inverse agonistic effects on h1 and h2 are available then there's no "silver bullet" and this assumes that this theory is correct. I have a hunch that h3 inverse agonists will prove to be successful ADHD medications as I've heard some people say SAMe and methionine helped with their ADHD, implying there may be a common histamine connection to our problem and some sufferers of attention disorders. Pitolisant (another H3 inverse agonist) has shown some efficacy in studies to treat schizophrenia. Similarly with http://en.wikipedia.org/wiki/ABT-239
this class of drugs appears to have a nootropic affect, stimulating memory, learning, concentration and increasing intelligence.
This is an emerging area in neuroscience research. This overview paper is as recent as 2004 http://learnmem.cshlp.org/content/11/1/1.full
Remember that drugs can have a very long gestation period. Pharmaceutical companies don't rush them out on the market.
Clinical trials are showing that dosages are very important. In our brains, the h3 receptor triggered reduction of neurotransmitter production is being done by the body for safety reasons. Accepting that some people (POIS sufferers perhaps) could have a malfunction, most people would not want their h3 receptors antagonised on a permeant basis. It could prove overstimulating, affect cardiac rhythms etc. It may be safer than amphetamines but these will still be powerful drugs.
Anyway, it's a research area for NORD to consider.
It seems there is some H3 antagonist only :
Ciproxifan
Conessine
Impentamine
Iodophenpropit
There is something I dont understand : apparently H3 antagonist help release of histamine :
Ciproxifan is an extremely potent histamine H3 inverse agonist/antagonist.
The histamine H3 receptor is an inhibitory autoreceptor located on histaminergic nerve terminals, and is believed to be involved in modulating the release of histamine in the brain. Histamine has an excitatory effect in the brain via H1 receptors in the cerebral cortex, and so drugs such as ciproxifan which block the H3 receptor and consequently allow more histamine to be released have an alertness-promoting effect.[1][2][3]
Hi though we were trying to lower the level of histamine release.I probably missed something
Yes, my understanding is it isn't as simple as that. H3 uptakes histamine (good) but they are also inhibitory hetero-receptors for other neurotransmitters including dopamine.So I think that providing a histamine antagonist may stop them (just by physically blocking the receptors) from reducing levels of dopamine and serotonin in the brain. This seems to be what happen's in trials of the drug. However, even the drug companies developing these drugs don't seem 100% sure how they work.
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I'd say that's an excellent idea.
It might be a good idea to read about histamine intolerance, the special diets people follow and note if you have similar reactions.
I have reactions to cheese, wine, chocolate & pretty much all the high histamine foods. I get the same odd throbbing feeling in my head and stomach upsets I get with POIS.
See this http://www.allergyuk.org/common-food-intolerances/histamine-intolerance
They're not saying that eating any of these foods will make you sick immediately but if foods make you feel unwell, give you what you believe to be indigestion, nausea, dizziness, upset your sinuses or give you a headache then make a note of them and check if they're high in histamine.
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This all makes so much sens to me and I really do think this could be it. I'm so exited about these findings!
I searched around a bit on the internet about histamine and i read that for instance red wine is especially complicated to intake for people who are sensitive to histamine because it not only contains histamine, as do a lot of things (cheese etc.), but also the alcohol inhibits the bodys ability to break down the histamine. I cant drink red wine at all, i get a terrible headache and get very hot and red in the skin, i even get skin reaches from it. This is probably because i am sensitive to/have a high amount of histamine.
As for my own cure with Phosphatidylserine I found this:
Phosphatidylserine, in contrast with other phospholipids, markedly enhanced histamine release from rat peritoneal mast cells induced by dextran or protein antigens. This enhancing effect was selective for dextran and protein antigens and did not extend to the action of compound 48/80 or chymotrypsin. These findings suggest a role for phosphatidylserine in the response of mast cells to antigens.
So it might be a connection there to. But I will definitely try the DAO:s and the methionine and i think they will be more effective. I stated earlier that i was about 80% Pois free with the PS, but it acctually varies a bit, sometimes its 50% and at best 80%. I will stop taking folic acid as well if it makes things worse, I take a combined b6/folic acid tablet in the morning but will switch to only b6 instead.
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WHICH specific component of semen does the desens theory claim is the allergen(s)? Sperm? Fructose? Proteolytic enzymes? ALL semen components??
Does a SPECIFIC allergy to one or more of seminal components below need to be tested?
The components and contributions of semen are as follows:
Gland
Approximate %
Description
testes
2–5%
Approximately 200- to 500-million spermatozoa (also called sperm or spermatozoans), produced in the testes, are released per ejaculation. If a man has undergone a vasectomy, he will have no sperm in the ejaculation.
seminal vesicle
65–75%
amino acids, citrate, enzymes, flavins, fructose (2–5 mg per mL semen,[3] the main energy source of sperm cells, which rely entirely on sugars from the seminal plasma for energy), phosphorylcholine, prostaglandins (involved in suppressing an immune response by the female against the foreign semen), proteins, vitamin C
prostate
25–30%
acid phosphatase, citric acid, fibrinolysin, prostate specific antigen, proteolytic enzymes, zinc (the zinc level is about 135±40 micrograms/ml for healthy men.[4] Zinc serves to help to stabilize the DNA-containing chromatin in the sperm cells. A zinc deficiency may result in lowered fertility because of increased sperm fragility. Zinc deficiency can also adversely affect spermatogenesis.)
bulbourethral glands
< 1%
galactose, mucus (serve to increase the mobility of sperm cells in the vagina and cervix by creating a less viscous channel for the sperm cells to swim through, and preventing their diffusion out of the semen. Contributes to the cohesive jelly-like texture of semen.), pre-ejaculate, sialic acid
From http://en.wikipedia.org/wiki/Semen#Composition_of_human_semen
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Yesterday was weird. I was on the border of an anxiety attack all day. It was day 5, however after a reasonable niacin session. I had to take 400mg to get a flush which was light. Day 1 was fairly rough, but strangely I did a lot of heavy work that day and it seemed to actually lessen the POIS. I don't know, it was as though the work seemed to activate something from the niacin effect. Normally exercise makes my POIS worse and I can't even do the amount that I did that day.
But getting back. The rest of the session has been good, little to no POIS after a good sleep the night of day 1.
Except for this day 5 anxiety. To make things worse, I didn't have my Xanax with me, that I usually have around "just in case". I tried to calm myself, and never really entered "an attack", but was feeling quite uncomfortable.
I started thinking about anti-histamines. Perhaps I was having a histamine surge or something. So I went to look for the equivalent of Benadryl (here in Chile) HA. Couldn't find it, but found loratadina. I am very cautious, certainly didn't want to make things worse, so just took a half dose.
It worked! Didn't feel any other effects, drowsiness, nothing, but the anxiety just went away within about half an hour.
Who knows, maybe even placebo!
Loratadina works on the H1. Who knows. I know anti-histamines have never worked for me with the more physical symptoms, but somehow something worked here.
Two things I noticed about your post here, Daveman. The first is about niacin. When I take niacin and "o" before a night's sleep the next day I've noticed I get increased physical strength and endurance, but I have to warm up before I'll notice that effect from the niacin kick in. So perhaps that is why the heavy work you did seemed to lessen your POIS.
The other thing is about Loratadina. I believe here in the states the equivalent is Loratadine, which is the generic version of Claritin. I've noticed that more of our POIS members have reported POIS symptom reduction with the use of Claritin than they have with Benadryl. Theoretically this doesn't make much sense seeing that Benadryl is able to cross the blood-brain barrier and is said to be a stronger anti-histamine than Claritin, but it seems that for some unknown reason Claritin just works better for POIS. You may want to try taking your Loratadina about an hour before having an "o" seeing as that's about how long before it's fully absorbed into the blood stream and that seems to be the most effective way of using it for POIS. I have noticed that it tends to stay in my system about 3 days, will make me slightly sleepier the following day of dosage, and if I take a second 10mg tablet within the 3 day period I'll get a minor headache.
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Try clarityn D with pseudo-ephedrine. You don't feel sleepy and it's effective in terms of reducing histamine levels. It's a smaller dose of the PE in an epi-pen.
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Good suggestion on claritin D, kurtosis. I'll have to try it.
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Try clarityn D with pseudo-ephedrine. You don't feel sleepy and it's effective in terms of reducing histamine levels. It's a smaller dose of the PE in an epi-pen.
As far as the work and niacin, I think you are right on. That was my feeling anyways, that it helped the niacin do it's thing.
I don't know if the day 5 kickback had anything to do with that..... that's kind of why I told the whole story!
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Our POIS Medical Research Funding Progress!
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Most may remember "Squiqqy" in Laverne and Shirley's TV sitcom...he has gone much of his life with a
complex disorder that makes living a pain! It's not POIS, but if you watch this video you'll see
that we have a lot in common.
http://www.youtube.com/watch?v=ubgURSn45jE&sns=em
He knows about us and offers us all of his wishes, that we push hard, as he has done in his life, to beat
this thing. Our solution and the solution for all the POIS sufferes of the world... even those who haven't
heard about our forum, is through RESEARCH
We are ALMOST THERE!!!
ONLY $9,000 more to go and POIS will *finally* begin SERIOUS MEDICAL RESEARCH towards our cure!
Please give generously. To yourself! NOW!
Click here to PLEASE donate:
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Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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I found this comment interesting when I was eating about vasectomy:
"Because sperm contain only half the chromosomes of the body?s cells the immune system thinks they are foreign invaders and quickly walls them off, creating a firm nodule of tissue at the end of the vas."
https://onemoresoul.com/news-commentary/vasectomy-safe-and-simple.html
The article quite anti-vasetcomy.
FB
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I found this comment interesting when I was eating about vasectomy:
"Because sperm contain only half the chromosomes of the body?s cells the immune system thinks they are foreign invaders and quickly walls them off, creating a firm nodule of tissue at the end of the vas."
https://onemoresoul.com/news-commentary/vasectomy-safe-and-simple.html
The article quite anti-vasetcomy.
FB
My opinion is that my POIS is a result of a long term vasectomy (20+ years) followed by a reversal. My POIS came
about 5 yrs after the reversal.
My urologist told me that a large percent of individuals with vasectomies have antibodies to sperm.
Generally, vasectomies are considered safe, because there is still a blood barrier. The antibodies do enter the bloodstream,
but sperm does not.
IF sperm enters the bloodstream, there is a BIG problem. However, this is not normally the case.
The urologist however indicated that longer term vasectomies really mess up the very fine tissues within the testicles. Sperm are attacked
by the antibodies. So he said that most reversals, especially with time, are not successful because the sperm are attacked and destroyed
before the can "be used".
Eventually, damage can be enough, especially if a reversal is done, and other tissues are exposed to the auto-immune battle. Injuries can be
caused which eventually expose the sperm to the bloodstream.
This is not far off of what Dr. Waldinger has said, BUT is in no way and allergy! It is auto-immune. THE TREATMENTS ARE ENTIRELY DIFFERENT.
AND worse, desens may even create a similar problem that might not have originally existed. If for instance POIS were something else all together.
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i don't know how to take this but i found it typing sperm and bloodstream on g.
it's about a guy injecting his own semen for no apparent reason experimenting some symptoms that seem to be assimilated to pois.
www.ehelp.com/questions/10437550/what-is-the-long-term-effect-of-injecting-my-own-sperm-into-my-blood-sream
i have injected 20 cc of my own sperm into my arm (blood stream) while it was still white and warm (I have done this 3 or 4 times). What will this do to me long term. The first time I did this it was a real head rush, and I felt I was going to pass out. Somehow, I had a strange taste in my mouth. I noticed the last time I must have shot more than 20 cc and I got really cold, and had to take a hot shower to get through it. I felt weak and was not able to walk striaght, felt really sick, and was shivering. Extra question, does sperm have stem cells, that can rebiuld brain cells??
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i mean this guy is clearly an idiot. but given he's saying the truth, it confirms my feeling that the answer has to be related to some sort of leak in the bloodstream. the bigger the worse.
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It's funny, the one thing i've learned from this site is how little we know about the disorder and how foolish it is to be dismissive of ideas regarding it.
Initially, people were very dismissive of people who suggested there was some link between POIS and excessive masturbation. Now, it seems entirely plausible (even to the most skeptical) that such activity could cause harm to the vessels carrying semen, and would cause semen to leak across the barrier -- resulting in the formation of anti-semen antibodies.
Also, people currently seem convinced (by what, i don't know) that trained immunologists are undertaking the incorrect treatment when administering injections to decrease immune response -- notwithstanding some evidence (including first-hand knowledge on the part of several members) that such treatment is incredibly effective.
I do wonder how we will look back upon many of our ironclad theories in 5-10 years.
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Also, people currently seem convinced (by what, i don't know) that trained immunologists are undertaking the incorrect treatment when administering injections to decrease immune response -- notwithstanding some evidence (including first-hand knowledge on the part of several members) that such treatment is incredibly effective.
Trained immunologists ALWAYS test for positive reactions to an allergen before desensitizing to it. Why? Just to avoid over-sensitization? NO
They don't want to expose your system to something that doesn't presently cause allergies, potentially creating a problem that didn't originally exist.
That can't be done with POIS. There isn't a developed and proven procedure for testing semen allergy.
There are tests that can detect allergic reactions perhaps (aside from the whelt that the injections leave), but these are not double blind tested.
Will a non-poiser show a positive reaction? It isn't pollen. It's a foreign body that shouldn't be in the bloodstream.
Perhaps the trained immunologists are taking "the doctors' " word for it.
I'm not taking the risk.
One of our members may have suffered irreversible damage from excessive B6 intake. That was a risk that was known. At the time he took the B6 he thought it was
worth the risk. Now, he's thinking differently.
I'm not going to do desens until research proves it's effective and safe.
As I said. You and I can both say we have our cures. Doesn't mean they work for everyone, and the risks should be taken seriously.
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Perhaps the trained immunologists are taking "the doctors' " word for it.
I'm not taking the risk.
I'm not going to do desens until research proves it's effective and safe.
My doctors certainly are not, as i've made sure to ask them about the potential risks. But you absolutely have the option of waiting-it-out; i've never tried to keep you from doing so. I hope that such research emerges in our lifetimes (-- although, given the pace of POIS research, i'm certainly not holding my breath).
My problem isn't with the decision to refuse consultations with physicians and wait for "definitive" research. It's with the fact that the decision to wait has been construed as the only sensible one -- even for members whose symptoms are so severe that they are incapable of pursuing a career capable of generating a sustainable income.
There's no evidence that desens is harmful. So telling someone whose life (and potential happiness) is currently crippled by POIS doesn't seem an especially sensible decision to me.
One of our members may have suffered irreversible damage from excessive B6 intake. That was a risk that was known. At the time he took the B6 he thought it was
worth the risk. Now, he's thinking differently.
Clearly you realize that this situation is not analogous to a treatment undertaken by physicians who have specialized in this field.
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One of our members may have suffered irreversible damage from excessive B6 intake. That was a risk that was known. At the time he took the B6 he thought it was
worth the risk. Now, he's thinking differently.
Clearly you realize that this situation is not analogous to a treatment undertaken by physicians who have specialized in this field.
Whether its analogous or not, I hesitate to say... but it is certainly pertinent.
Especially in light of this conversation:
It's with the fact that the decision to wait has been construed as the only sensible one -- even for members whose symptoms are so severe that they are incapable of pursuing a career capable of generating a sustainable income.
You make it sound as though I WANT people to suffer! You clearly don't understand the potential risks involved. Even though they may be 1 in 1000, we could even say 1 in 200, so little testing has been done and over such a short period of time.
It is preferable in my opinion that we wait "just a little longer", and believe me I understand what POIS is and how awful it feels, than to potentially expose someone to an irreversible nightmare later.
Not to mention that for several who have undergone desens treatments with trained professionals, it has meant just about non-stop POIS for more than a year.
I know that someone who is suffering POIS will want to do anything that he thinks will give him a chance to be rid of POIS. They say, "I don't care what the risks are"... until
they end up being one of the ones who suffers irreversible damage.
Maybe he should try niacin or viagra first. I can say, that it has rid me of my POIS. Wouldn't it be better to try something like that, which doesn't take a year and a half of suffering to find out if it really works for him? Try it for 4 weeks, making sure that the procedures are properly applied, and then if that doesn't work, we should know who and what the research program will be.
What if we are surprised by the program? And there could be ANY number of surprises to come.
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Just putting in my 2 cents. For me, this "desensitization to sperm" idea just lacks a lot of backing. Yesterday, I almost "O'd" (felt a "tiny bit" of orgasm), but did not have any sperm ejaculate, but had POIS because of it. This tells me it is something released in your brain, or by your body that goes to your brain, that causes POIS. Again, by POIS I mean my POIS because you all are different. But it just doesn't make any sense to me to feel this way because of the sperm I've had most of my life that I never had an allergy to for the most part. I feel like my POIS started possibly by the release/development of an antibody, or something in my brain and whenever I have an orgasm, it is attacked by this specific antibody. I really don't believe POIS, as in my POIS, is caused directly by sperm. Ok GLC shut up and wait for the research.
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Thanks, GLC! :)
You make a lot of sense.
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I have done Desense. I can be harmful. I had to see for myself what was what.
It wkd toward the middle, to an extent.. and then made things more severe beyond 1/1000 dilution. I went all the way down to 1/600 which felt like a severe POIS episode and then stopped...
More than anything I gained a piece of mind knowing that I was not harming my body with my mind or sex. It was my body attacking itself by whatever means POIS actually does manifest. My arm would swell up in the localized area of the shots in the Drs. office. I would have something that looked akin to a bee-sting. I believe there is an immunological component here, but the why or the how I think is not necessarily answered by shooting semen into our arms.
I would not recommend doing this treatment until more research is done on everything POIS. If you do it just to see that it is not you at lower dilutions you will probably not hurt yourself (1/80k)..
Let's stick with the current research for now; and if it doesn't pan out we can hypothesize some more. But this one needs more solid evidence and research to prove as a viable option. Immunology can be voodoo in the med-science world sometimes w/ unknown dependent and independent variables.
The more guys we find w/ POIS the better we can test all hypothesis. Get the word out there. I tell family and friends now- because they must know the hell that this is, and that it is real...
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I find it difficult to believe that the POIS I experience is due to sperm mainly because of my main reaction in my brain where you feel orgasm. How can sperm cause an allergy-type reaction there? Is your POIS similar Andy? I have no physical symptoms. Maybe there is more type of POIS's, those with mainly physical reacting to sperm and those with cognitive reacting to a hormone but only god knows.
I also would still like to know if normal men were injected with their own semen would they "swell" up and have a reaction.
I may try my own skin prick test soon.
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Hi Andy451,
Did you test positive for semen allergy skin prick test?
FloppyB
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I think in his latest review article, Dr Waldinger somehow puts the desense idea on the backburner - see my opinion at http://poiscenter.com/forums/index.php?topic=2346.msg19538#msg19538 ( you will also find in this thread the link to this August 2016 Waldinger article)
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Anyone know of Allergists willing to do desensitization in Georgia, Florida, Colorado, or Texas? If not, where do you guys do desens at?
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Anyone know of Allergists willing to do desensitization in Georgia, Florida, Colorado, or Texas? If not, where do you guys do desens at?
Hi Liyyamurr and welcome to the forum,
POIS is not a syndrome that allergists or any other specialist or physician know about. It is a rare syndorme, and only a handful of researchers know about POIS. So, obviously, desensitization with your own semen is something no doctor will know about, and if you want to discuss this with ANY doctor, I strongly suggest you bring along a copy of the scientific paper written by Dr Waldinger on desens. Otherwise, chances are the doctor will think you are out of your mind, and will refer you to a psychiatrist ;)
As I have mentioned above in this thread, Dr Waldinger himself, who is in Netherlands, seems to have stopped using desensitization, citing it was too time consuming, and not covered by insurance companies.
Not many members have tried desensitization, let alone showing good results with this technique. To my knowledge, one member has reported 75% relief after 3 years, which is not very convincing, and it is maybe part of the reason Dr Waldinger has now turned his focus elsewhere. So I am not aware of any physician doing this on this side of the ocean.
Maybe some other members know more about this.
The current research going on in New Jersey, by Dr Komisaruk, founded by this very forum, is testing a treatment based on vagus nerve stimulation. Results will be out next year. Desensitization, for now, seems to be on a downward slope.
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Hi Quantum,
Where did you get the information saying the results of the Dr K's research will be out next year?
Thanks - FB
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Hi FB,
It is just my guess based on the study ongoing calendar, and the delays in each part of the study so far.
Somewhere between now and the end of the year, the experimental part of the study will be over ( that is, the tests and measurements with POIS sufferers participating in the study.) After that will begin the review of the data, the discussion of these data and what can be learned from the results of the study, and the writing of the paper itself. When this final paper will finally be to their liking, it will be pair reviewed ( probably in this case by a NORD committee? I don't know about all the details). When everything will be fine with the final paper, it will be submitted to a scientific journal for publication, and eventually, accepted for publication. It is hard to know exactly at this time when it will be published, but it should be somewhere in 2017. It depends on the speed at which each step will be completed: redaction, revision, acceptation for publication, and any other step I do not know about because I do not work in the research field. It is hard to tell when the publication itself will happen. Early 2017? Spring 2017? Later? I have no idea, but I do hope it would be in the first months of 2017.
The 4th - and last, I think - interim report will be out maybe in a month or so. From there, I would be very surprised that all the other steps would be completed in the 10 weeks or so before the holiday break, that is why I expect the results for 2017.
Sorry if this come as a disappointment for any member, but in the other hand, I am not sure that many are surprised, considering the slow pace for each step of the study, so far.
But I am sure it will have worth the wait. Valuable knowledge on POIS and its treatment will be detailed in the final paper. Furthermore, whatever the results, this study will put POIS on the map of medical research, and attract more attention to it, and make more POIS data available in scientific articles for other researchers. Do not forget that this paper will contain, among other things, the data obtained from the members of this forum through the survey done here last summer ( June and July 2015) by the Rutgers team. I do not know exactly how many members have answered this extensive survey, but it will be for sure the largest set of data, obtained from the largest number of POIS sufferers, ever to be published so far.
And this all have been made possible by this forum, so thanks to the poiscenter forums founders !!! :)
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I dont know if anyone posted this article before. I googled Post orgasmic illness syndrome and google's top results were scholarly articles. I Looked through those articles and found dr berstein and his colleagues did semen allergy test on healthy men to see if they react. In addition he tested to see if reaction is caused by ige or pgs. The link is not a full article so i am not 100% about the results.
http://search.proquest.com/openview/6dae699607307350ab0dd29cd0332bfe/1?pq-origsite=gscholar&cbl=2031058
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Thanks, CP2!!
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It would good if someone could get the full article...
FB
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It would good if someone could get the full article...
FB
The full article is $31.50
Click & scroll (way) down to gray bar: "Clinical Communications" -- then see 3rd article down -- to purchase:
http://www.sciencedirect.com/science/journal/22132198/2
I concur with Quantum: this controversial treatment has apparently been abandoned by Waldinger, its main proponent.
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Fiction - that will by chance sometimes work :)
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Has anyone tried and is it even worth trying this simple test? You would essentially ejactulate into a sterline container. Store the container (freeze?) until your POIS symptoms subside and you return to normal. Using a syringe of some kind, warm and reinsert the stored semen back into the urethra and wait a few minutes for a POIS reaction. Semen could then be removed by squeezing fingers up the urethra followed by urination.
Anyone know of anything of this nature?
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Semen desensitization decreased my inflammatory symptoms, improved my sleep quality, mood and digestion, and I gained very good muscle mass at the gym, but I just relapsed after I stopped it. Does that mean my pois is autoimmune? or there are other hidden mechanisms for that. I had a positive skin prick test at the concentration 1:100 of dilution. And the injections I had was diluted samples ad well.
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or there are other hidden mechanisms for that.
https://www.preprints.org/manuscript/202112.0398/v1
Exosomes are in semen. You could apply desenz in POIS females, this could shed some light whether we deal with desenz in the classical sense or dealing with an alternative mechanism.