Author Topic: Official Desensitization plan Begins!  (Read 148687 times)

Egordon

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Re: Official Desensitization plan Begins!
« Reply #300 on: June 23, 2013, 11:10:45 PM »
Demo & Daveman,

With all due respect, I think that Van's sentiments regarding your objectivity and suspicions regarding the objectivity of the funding process should be taken a bit more seriously. Some of the comments that you've made regarding desensitization have absolutely made it seem like you have an agenda -- and, all the more troubling, have made it seem like you have an agenda with an even more tenuous scientific basis than desens. I think this is incredibly troubling for those of us who have seen the positive effects of desensitization and credit it with restoring our lives.

I, for one, am immensely grateful for this message board, and to each of you for the information that it's provided me with. It was the impetus for my acquiring treatment, and has kept me and my doctors well informed of new developments in the field. I honestly credit POISCenter with enabling me to be productive enough to get my current job, which pays quite well. But despite the fact that I credit this board for my improved financial standing, I didn't donate to the recent funding drive because I was concerned about the rigorousness of your selection process and the potential for your biases to influence it.

I know that both of you consider yourselves to be sufferers of a disease rather than leaders of a community. But you need to realize that, because you're the moderators of what's essentially the only POIS board, you have real influence. And, if you want to use that influence to raise money for our disease, you might be more effective if you downplayed some of your more impolitic sentiments.

POIS since I was about 15. 1.75 years of desens and I'm now about 80% POIS free. Still working through best practices for maintaining my immunity and administering my injections with my doctor. Email me if you have tips or questions!

demografx

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Re: Official Desensitization plan Begins!
« Reply #301 on: June 24, 2013, 12:31:47 PM »
Daveman and I strive mightily to be empathetic, impartial, fair, honest, POIS sufferers who simply want the BEST for ALL POISERS.

Present and Future POISers ALL.

Simple.

I'm sorry if we stepped on any toes, but the FORUM BALANCE of desens needed some more serious scientific scrutiny. Looking at the Forum, there are FAR more *positive* posts about desens than negative.

But it's difficult to have dialogue when certain forum members either misunderstand our intent, and do not respond to some of our very honest, FACTUAL (not "smear campaign") queries or they see every scientific or medical concern as a THREAT.

Major desens concerns have been brought up repeatedly both within the Forum Community and the Medical Community outside.

Should Daveman and I ignore all that? THAT would be biased moderating on our part.

Egordon, I sincerely wish your personal program great success.


« Last Edit: June 24, 2013, 12:54:51 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

poisperson

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Re: Official Desensitization plan Begins!
« Reply #302 on: June 25, 2013, 03:33:54 PM »
I wonder if this issue of whether or not people buy into the desens theory ties into the broader matter of there seeming to be two POIS types - the one with major physical symptoms and the one without, or where the physical symptoms are more fibromyalgia-like and have a delayed onset.

As a 'poiser' I can't relate my condition at all - and I think I speak for some others here - to the sudden onset of flue like symptoms immediately after ejaculation. My and others' symptoms manifest in the days after orgasm, perhaps peaking at day 2. Stories of people getting itchy scalps and fever and so on are POIS features completely distinct from my own and - possibly - these are the people for whom desens may be more relevant. Just a thought.

Either way, it might be worth getting some kind of dichotomy going here where Poisers are grouped as one or the other, and where researchers are made aware of the distinction, if others agree that there is such a distinction.     

Daveman

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Re: Official Desensitization plan Begins!
« Reply #303 on: June 26, 2013, 06:52:32 AM »
EGordon,

Van was overreacting to something that wan't there.

Demo and I communicate daily, and I can assure you, there was nothing on any kind of agenda for "making fun" of the
desensitization program.

It is true however we had been discussing the desensitization program based on the post from
Prof. Dr Abdalla attia & Dr  Hossam Yasien. (Which BTW supports information we have heard from other professionals in solid positions).

Several points I'd like to make:
1) We had great support from members of the forum, and were fortunate enough to raise funds to support the ONLY
program tha will get POIS out of the dark. It's unfortunate that you didn't take the time to do just a little bit of research on
the NORD program. YOU WOULD HAVE SEEN THAT THERE IS NO WAY TO INFLUENCE THE RESEARCH DIRECTION. We intentionally chose NORD
for that reason. There had been, and still is far too much conjecture and amateur medicine trying to lead POIS
GOD knows where.

2) We are administrators of this forum, and besides the 600+ members that use the forum there are many others who contact us and
share, including researchers and medical professionals. Among those have risen some very serious concerns. It puts us in a very delicate position.
We know that we can annoy some of you who feel they have been helped with desensistization, but the risks are too great NOT TO SAY SOMETHING.
In the end, our influence is weak, those who do not want to hear, won't listen. All we can hope is that soon NORD will get to the root of it
and either our fears will be wiped out, or we may have saved many who were preapared to listen.

3) EGordon. What if, just what if POIS was not an allergy to semen? There has been no definitive proof that it is. We don't know if non-POISers don't react to
the skin prick test. Why has this test NOT been done? Ethics? Is it ethical to inject semen into a POISer, without really even knowing if he has antibodies or is
actually allergic to his semen? What if he is not? He may have some kind of auto-immune  problem, but NOT allergy. Introducing semen to his blood on a regular basis
could cause a problem that is not there. A potentially serious problem. There's so much more I could say, but unfortunatley I am not at liberty.

4) It's very likely that anyone who has done desensitization will not be eligible for testing, as a matter of fact, it may be difficult to use anyone
from any of these forums to do testing because of the wide spread publicity of desensitization. How does a researcher know that an individual has NOT
done desens on himself? He cannot trust the readings. Does he have anti-bodies becasue he did desens, or becasue of POIS. People will lie to prove their point,
or to try to move their theory ahead. Does that help the POIS cause? So it may be very difficult to continue any real and valid desensitization testing.

Your only hope of that is that they can do desensitization testing without knowing if someone has previously tried it or not. One would have to assume that the desens.
theory is correct (scientists don´t like to assume) and follow some other double blind test procedure that is safe. It looks very difficult to me. You all really don't know what you are doing by trying to be docotrs yourselves.

Am I fear mongering? Complicated. I was a strong supporter initially of the "allergy theory", but I have heard too much to continue to support it.

I understand the problem. I could be stopping people from benefiting from desens., but I could be saving them as well. Based on the risks, I personally prefer the safe route.

There are plenty of forums on POIS who don't really care about our safety, and who are happy to be making you all happy with a new possibility ever other week.

It's the easy route. This hasn't been easy.
WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

FloppyBanana

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Re: Official Desensitization plan Begins!
« Reply #304 on: June 27, 2013, 12:54:53 PM »
Hi All,
I can see things are heating up here in the discussion. Let's respect the moderators and the work they put into this forum.

I got some really basic questions about Desensitisation which I'm I hoping someone can answer:

1) Why can't semen be frozen and used at will to dilute in solution to inject. I expect not Oing to provide a semen sample each time would make the treatment less painful.
2) Does medication interfere with desensitisation treatment? If so which of our listed remedies would complicate this. I know for example Progesterone suppresses the immune system.
3) How much does it cost approximately for a one treatment of desensitisation consisting of a jab one every 2 weeks.
4) Has there any casualties in semen desensitisation
5) How can I find the best dilutions stagey or is this something which is different for each person. If the latter there should surely still be some guide lines
6) Has anyone been total cured through desens (exclude Walldingers 90% patient)?

Lastly I would like to make point: I have looked through this forum and in my opinion there needs to be a really comprehensive survey which can only be done by a user once (if does a second time then results would update for the user). I think this is quite a big task though. Perhaps there has been something done but the ones I can see on this site are very small and provide me with more questions that answers.
Best - Floppy Banana
30 years of POIS. Mytelase after O with Iceman breathing technique.

demografx

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Re: Official Desensitization plan Begins!
« Reply #305 on: June 27, 2013, 08:13:14 PM »
Let's respect the moderators and the work they put into this forum.

Thank you for the breath of fresh air! :)
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

Egordon

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Re: Official Desensitization plan Begins!
« Reply #306 on: June 30, 2013, 09:14:08 PM »
EGordon,

Van was overreacting to something that wan't there.

Demo and I communicate daily, and I can assure you, there was nothing on any kind of agenda for "making fun" of the
desensitization program.

It is true however we had been discussing the desensitization program based on the post from
Prof. Dr Abdalla attia & Dr  Hossam Yasien. (Which BTW supports information we have heard from other professionals in solid positions).

Several points I'd like to make:
1) We had great support from members of the forum, and were fortunate enough to raise funds to support the ONLY
program tha will get POIS out of the dark. It's unfortunate that you didn't take the time to do just a little bit of research on
the NORD program. YOU WOULD HAVE SEEN THAT THERE IS NO WAY TO INFLUENCE THE RESEARCH DIRECTION. We intentionally chose NORD
for that reason. There had been, and still is far too much conjecture and amateur medicine trying to lead POIS
GOD knows where.

2) We are administrators of this forum, and besides the 600+ members that use the forum there are many others who contact us and
share, including researchers and medical professionals. Among those have risen some very serious concerns. It puts us in a very delicate position.
We know that we can annoy some of you who feel they have been helped with desensistization, but the risks are too great NOT TO SAY SOMETHING.
In the end, our influence is weak, those who do not want to hear, won't listen. All we can hope is that soon NORD will get to the root of it
and either our fears will be wiped out, or we may have saved many who were preapared to listen.

3) EGordon. What if, just what if POIS was not an allergy to semen? There has been no definitive proof that it is. We don't know if non-POISers don't react to
the skin prick test. Why has this test NOT been done? Ethics? Is it ethical to inject semen into a POISer, without really even knowing if he has antibodies or is
actually allergic to his semen? What if he is not? He may have some kind of auto-immune  problem, but NOT allergy. Introducing semen to his blood on a regular basis
could cause a problem that is not there. A potentially serious problem. There's so much more I could say, but unfortunatley I am not at liberty.

4) It's very likely that anyone who has done desensitization will not be eligible for testing, as a matter of fact, it may be difficult to use anyone
from any of these forums to do testing because of the wide spread publicity of desensitization. How does a researcher know that an individual has NOT
done desens on himself? He cannot trust the readings. Does he have anti-bodies becasue he did desens, or becasue of POIS. People will lie to prove their point,
or to try to move their theory ahead. Does that help the POIS cause? So it may be very difficult to continue any real and valid desensitization testing.

Your only hope of that is that they can do desensitization testing without knowing if someone has previously tried it or not. One would have to assume that the desens.
theory is correct (scientists don´t like to assume) and follow some other double blind test procedure that is safe. It looks very difficult to me. You all really don't know what you are doing by trying to be docotrs yourselves.

Am I fear mongering? Complicated. I was a strong supporter initially of the "allergy theory", but I have heard too much to continue to support it.

I understand the problem. I could be stopping people from benefiting from desens., but I could be saving them as well. Based on the risks, I personally prefer the safe route.

There are plenty of forums on POIS who don't really care about our safety, and who are happy to be making you all happy with a new possibility ever other week.

It's the easy route. This hasn't been easy.


I'm not going to write an especially lengthy response to your post, as i think that I said essentially everything I intended to in my last post. Whether you decide to take it seriously is up to you. I do, though, want to quickly respond to the general tenor of the anti-desens sentiment.

Notwithstanding the (largely unintelligible) writings of  Dr Abdalla attia & Dr  Hossam Yasien and all the touting of whisper campaigns being waged by unnamed dissident medical professionals, I've not yet seen even ONE peer-reviewed article suggesting any of the supposedly grave dangers that desensitization poses. I genuinely do respect the work that the two of you have done, but neither of you are doctors. And these supposed medical professionals who are unwilling to give comments on-the-record, or submit their (supposed) research for scrutinization by their peers simply are not credible to me. Desens has been around for some time now. Several peer-reviewed articles have been written about it and pois, and if it had the glaring methodological flaws you've contended it does, i'd certainly hope that specialists writing on it would have noted them.

(It also bears mentioning that those of us receiving desens are treated by doctors using their independent medical judgement to assess the credibility of Waldinger's theories, and who are mindful of the harm that they could cause if they are wrong. I personally find the expertise of these individuals more credible than whisper campaigns.)
POIS since I was about 15. 1.75 years of desens and I'm now about 80% POIS free. Still working through best practices for maintaining my immunity and administering my injections with my doctor. Email me if you have tips or questions!

Egordon

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Re: Official Desensitization plan Begins!
« Reply #307 on: June 30, 2013, 09:25:49 PM »
Hi All,
I can see things are heating up here in the discussion. Let's respect the moderators and the work they put into this forum.

I got some really basic questions about Desensitisation which I'm I hoping someone can answer:

1) Why can't semen be frozen and used at will to dilute in solution to inject. I expect not Oing to provide a semen sample each time would make the treatment less painful.
2) Does medication interfere with desensitisation treatment? If so which of our listed remedies would complicate this. I know for example Progesterone suppresses the immune system.
3) How much does it cost approximately for a one treatment of desensitisation consisting of a jab one every 2 weeks.
4) Has there any casualties in semen desensitisation
5) How can I find the best dilutions stagey or is this something which is different for each person. If the latter there should surely still be some guide lines
6) Has anyone been total cured through desens (exclude Walldingers 90% patient)?

Lastly I would like to make point: I have looked through this forum and in my opinion there needs to be a really comprehensive survey which can only be done by a user once (if does a second time then results would update for the user). I think this is quite a big task though. Perhaps there has been something done but the ones I can see on this site are very small and provide me with more questions that answers.
Best - Floppy Banana

F.B.,

As the moderators are often keen to remind us, criticism should not be perceived as disrespect. I've said repeatedly that i respect and appreciate both of them and the work that they've done. But I certainly do not agree with their approach to this particular issue.

1) The semen usually is frozen. But because the antigens in it produce strong reactions by our immune systems, we still get POIS symptoms when we receive shots.
2) No, generally. Although antihistamine definitely interferes with allergy tests. (Prednisone probably shouldn't be on the list of remedies. Although it works wonders in the short term, it can't be taken for more than a few days at a time because doing so is incredibly dangerous.)
3) Depend on your insurance. Before I hit my deductible ($450), shots were about $15 a pop. Now they're like $3.
4) Despite what you've heard, no. To our knowledge, no one has ever died from the treatment. One person does seem to have had a systemic reaction though.
5) Your allergy test will give your doctor an idea of where your treatment should start. Because of the novelty of the program, it's likely that your physician will take an incredibly conservative approach and start at something like 1 : 30,000
6) Not to my knowledge. But many people -- including myself -- have had their lives changed completely by the therapy. Consensus seems to be that upwards of 70% of symptoms are typically eliminated.
POIS since I was about 15. 1.75 years of desens and I'm now about 80% POIS free. Still working through best practices for maintaining my immunity and administering my injections with my doctor. Email me if you have tips or questions!

demografx

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Re: Official Desensitization plan Begins!
« Reply #308 on: July 01, 2013, 09:34:04 AM »
Egordon,

There are few doctors in the US, who will support desens without proof positive of actual allergic reaction  beforehand. Since you have one who feels the process is safe, and knows how to safely administer it, please provide his data so that we can at least assure that it is being applied with the best of precautions.

We have made our position clear, but if, as you say, there are professionals who are willing to safely administer the program, then by all means all you who have done valid medically applied desens., please share your information here.

We will endeavor to take this "out of the closet", to find professionals "pro and con"  who are willing to express their opinions publically.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

FloppyBanana

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Re: Official Desensitization plan Begins!
« Reply #309 on: July 01, 2013, 01:21:38 PM »
Hi Demografx,
I understand you want to keep a least of people that are having desensitisation as they may not be eligible for official research programs in the future. I guess some people figure that due to where they live they are never going to be part of the testing and they want to push forward to find a solution for themselves.

Does this forum have a list of allergists who are doing semen desensitisation and are there any in the UK?

Egordon - Thanks for your feedback.
FB
30 years of POIS. Mytelase after O with Iceman breathing technique.

demografx

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Re: Official Desensitization plan Begins!
« Reply #310 on: July 01, 2013, 03:06:48 PM »
Hi Demografx,
I understand you want to keep a least of people that are having desensitisation as they may not be eligible for official research programs in the future. I guess some people figure that due to where they live they are never going to be part of the testing and they want to push forward to find a solution for themselves.

Does this forum have a list of allergists who are doing semen desensitisation and are there any in the UK?

Egordon - Thanks for your feedback.
FB

I don't know of any docs doing desens for POIS.

Maybe someone else can answer the question.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

Egordon

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Re: Official Desensitization plan Begins!
« Reply #311 on: July 05, 2013, 09:38:52 PM »
Egordon,

There are few doctors in the US, who will support desens without proof positive of actual allergic reaction  beforehand. Since you have one who feels the process is safe, and knows how to safely administer it, please provide his data so that we can at least assure that it is being applied with the best of precautions.

We have made our position clear, but if, as you say, there are professionals who are willing to safely administer the program, then by all means all you who have done valid medically applied desens., please share your information here.

We will endeavor to take this "out of the closet", to find professionals "pro and con"  who are willing to express their opinions publically.

Demografx,

While one of my doctors does work, in a limited capacity, as a research physician, neither of my doctors have conducted any formal research on POIS. As a result, the only data they have is my medical file. I'd be happy to share certain portions of that file with interested parties, but i'm not quite sure what it would accomplish. My doctor hasn't deviated from Waldinger's formula in especially significant ways: I received an allergy test; tested positive; and have slowly been brought up to 1:1 over the course of the past year and a half, with regular monitoring (and recording) of my response to the treatment. 

Why do you say there are doctors willing to administer this treatment without proof positive of an allergic reaction?
POIS since I was about 15. 1.75 years of desens and I'm now about 80% POIS free. Still working through best practices for maintaining my immunity and administering my injections with my doctor. Email me if you have tips or questions!

FloppyBanana

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Re: Official Desensitization plan Begins!
« Reply #312 on: July 06, 2013, 03:44:51 AM »
FYI
I have had the semen skin prick test (in london by the government hospital) but I found it was not done in accordance with Waldingers method. They simply did a prick (not injection) through undiluted semen. The skin prick was barely through the surface of the skin. When I look at Waldergers POIS vid I can see they inject diluted semen right under the skin. When I can find someone who will do the skin prick test in the right way I will provide them the detailed requirements in Waldergers second paper. The type of semen allergy test I had, as they told me was the same as how they test woman for the potential fatal semen allergy they can have. I have never heard of any male having this type of reaction but I saw an article (in Chinese) explaining that this type of semen allergy is the RAREST condition know. Above even allergy to water, allergy to sunlight and also the elephant man syndrome. On this basis, I would guess that the chance of a male testing positive from the way I had the semen test would be EXTREMELY rare.
FB
30 years of POIS. Mytelase after O with Iceman breathing technique.

Egordon

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Re: Official Desensitization plan Begins!
« Reply #313 on: July 06, 2013, 11:23:18 AM »
FYI
I have had the semen skin prick test (in london by the government hospital) but I found it was not done in accordance with Waldingers method. They simply did a prick (not injection) through undiluted semen. The skin prick was barely through the surface of the skin. When I look at Waldergers POIS vid I can see they inject diluted semen right under the skin. When I can find someone who will do the skin prick test in the right way I will provide them the detailed requirements in Waldergers second paper. The type of semen allergy test I had, as they told me was the same as how they test woman for the potential fatal semen allergy they can have. I have never heard of any male having this type of reaction but I saw an article (in Chinese) explaining that this type of semen allergy is the RAREST condition know. Above even allergy to water, allergy to sunlight and also the elephant man syndrome. On this basis, I would guess that the chance of a male testing positive from the way I had the semen test would be EXTREMELY rare.
FB

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

(As a side note: that's a pretty scientifically scrupulous test. And it tests for one's reaction to histamine, so if we were just having a typical, histamine-release oriented reaction to semen (rather than an abnormal or allergic one) I have a fair amount of confidence my doctor would be able to see as much. I'm not sure that the anti-desens folks are aware that mechanisms like this are already in place to ensure that POIS is an allergy, not just an irritation.)
« Last Edit: July 06, 2013, 11:31:25 AM by Egordon »
POIS since I was about 15. 1.75 years of desens and I'm now about 80% POIS free. Still working through best practices for maintaining my immunity and administering my injections with my doctor. Email me if you have tips or questions!

Daveman

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Re: Official Desensitization plan Begins!
« Reply #314 on: July 06, 2013, 01:37:08 PM »
FYI
I have had the semen skin prick test (in london by the government hospital) but I found it was not done in accordance with Waldingers method. They simply did a prick (not injection) through undiluted semen. The skin prick was barely through the surface of the skin. When I look at Waldergers POIS vid I can see they inject diluted semen right under the skin. When I can find someone who will do the skin prick test in the right way I will provide them the detailed requirements in Waldergers second paper. The type of semen allergy test I had, as they told me was the same as how they test woman for the potential fatal semen allergy they can have. I have never heard of any male having this type of reaction but I saw an article (in Chinese) explaining that this type of semen allergy is the RAREST condition know. Above even allergy to water, allergy to sunlight and also the elephant man syndrome. On this basis, I would guess that the chance of a male testing positive from the way I had the semen test would be EXTREMELY rare.
FB

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

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

What test did he make to differentiate between histamine release reaction / abnormal allergic one? Increasing slowly to the point of reaction is NOT enough.

A normal person will react equally, or could. It is no proof positive!

Is your doctor an allergist?

If so, please provide his data. If he is real, and if he knows what he is doing, we could use him.

Name, credentials and contact information. Please don't keep it private. It doesn't lend confidence.

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