Author Topic: Free Flow Discussion about POIS  (Read 1012899 times)

Bulbo

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Re: This may seem like a familiar place.
« Reply #900 on: June 18, 2013, 09:39:22 PM »
There is also the fact that Dr. Waldinger did not test the patients for anti-sperm antibodies. And if autoimmune theory was true then most of the sperm should have been destroyed by antibodies resulting in infertility of the patient

demografx

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Re: This may seem like a familiar place.
« Reply #901 on: June 19, 2013, 06:06:11 AM »
Thank you, Vincent, poiseidon, Bulbo, and others, for keeping the discussion alive.

As an analogy, my TRT works like a charm (for me), but I cannot tell anyone WHY. There is no "testosterone theory" investigated that has a test group and a control group.

And there is *no* control group in the  desens "study".  Every medical investigator I've talked to says "without a control group of non-POISers, this is *not* scientifically acceptable medical research that was published."

And (again, analogously) even though TRT's  worked for some people, I would never recommend it directly to another individual and I constantly caution people to investigate the risks, like losing the ability to have children.

I've been involved in POIS forums since 2007 and although hundreds of facts and hypotheses have been whirling around and flying in many directions...we are unfortunately still in the Dark Ages of POIS. We know nothing. Yet!


« Last Edit: June 19, 2013, 07:02:06 AM 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

poiseidon

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Re: This may seem like a familiar place.
« Reply #902 on: June 19, 2013, 09:25:21 AM »
Thank YOU, demo.
I guess that if we'll ever get any close to the cure, any of us would have to owe it to you, Dave and to all members who contributed  with their time and donations to make it happen.

And if we do find a cure I think we won't have any excuses not to become very rich and meet on a secret island every five years.  ;D
« Last Edit: June 19, 2013, 09:28:34 AM by poiseidon »
After spending loads on supplements I found out that the only thing that works is abstinence. Full stop. And it's free.
Meditation if done correctly is great too.
Also avoiding computers produce faster recoveries and fewer temptations.

Vincent M

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Re: This may seem like a familiar place.
« Reply #903 on: June 19, 2013, 12:21:48 PM »
There is also the fact that Dr. Waldinger did not test the patients for anti-sperm antibodies. And if autoimmune theory was true then most of the sperm should have been destroyed by antibodies resulting in infertility of the patient

It's not necessarily sperm that's causing the reaction. I think it's more likely some other component of semen, which the animus case seems to support since he didn't get full relief from pois until having surgery to nearly completely eliminate semen production.
Taking ginger tea, no wheat, fenugreek+green tea/garlic, saw palmetto, niacin, boswellia, huperzine, B complex and nutmeg. See my treatment summary post for more info: http://poiscenter.com/forums/index.php?topic=81.msg3513#msg3513

poiseidon

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Re: This may seem like a familiar place.
« Reply #904 on: June 19, 2013, 02:01:35 PM »
That's exactly what I was talking about! ;D
After spending loads on supplements I found out that the only thing that works is abstinence. Full stop. And it's free.
Meditation if done correctly is great too.
Also avoiding computers produce faster recoveries and fewer temptations.

demografx

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Re: This may seem like a familiar place.
« Reply #905 on: June 19, 2013, 05:11:14 PM »
There is also the fact that Dr. Waldinger did not test the patients for anti-sperm antibodies. And if autoimmune theory was true then most of the sperm should have been destroyed by antibodies resulting in infertility of the patient

It's not necessarily sperm that's causing the reaction.

True. When I lost my sperm...I still had POIS.


« Last Edit: June 19, 2013, 05:22:29 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

Vandemolen

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Re: This may seem like a familiar place.
« Reply #906 on: June 19, 2013, 09:17:23 PM »
You can make fun about desensitization. But I have 70 % less symptoms thanks to desens. I think a lot of forum members would be happy with 70 % less symptoms. Making fun about a method will not help us. Niacin doesn't work for me. But I am not making fun about niacin. I also not making fun about testosterone or other methods. I am very disappointed in some people.

I am 100 % sure that the POIS grant will not go to a doctor who supports the auto immune theory. But desens helped me. And removing my tonsils helped me. I was quiet for a long time about this jokes and this mocking. But I have to say it now.
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

demografx

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Re: This may seem like a familiar place.
« Reply #907 on: June 20, 2013, 09:48:31 AM »
You can make fun...[jokes and this mocking] about desensitization.

No jokes here, Vandemolen!

Just steady discussions where *serious* concerns are expressed for ***the entire POIS community***, present and future sufferers all. About desens. There are problems. Sorry!

We are all ***sincerely pleased*** that you are feeling better!

Any humor introduced is welcome as long as it does not attack another member. In fact, someone complained that a recent cartoon shown was too pro-desensitization! Others said it was against. I saw it as simply Forum Humor. Different perceptions lead to controversy. We are controversial here, but we are FRIENDS. We want us ALL to be POIS-free!

Van, we ***all*** want the same thing: (1) a cure (something that works for EVERYONE) and (2) a theory that holds up to stringent medical scientific scrutiny.

Apart from the innocent cartoon, there are NO JOKES here, van. This is dead-serious business.

I am 100 % sure that the POIS grant will not go to a doctor who supports the auto immune theory.

Perhaps because the Medical Advisory Committee (MAC at NORD -- one of the most distinguished medical review panels in the world) might not see sufficient medical research integrity and justification in autoimmune?

But...please explain why, Van, did you say that you are 100% sure that autoimmune will be rejected for Grant study?

Please reply. Thank you.

« Last Edit: June 20, 2013, 10:23:54 AM 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

Vandemolen

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Re: This may seem like a familiar place.
« Reply #908 on: June 20, 2013, 09:24:49 PM »
Everybody who will make jokes about your TRT treatment, will get a ban. I am 100 % sure of that. And you only joke about desens because dr. Waldinger didn't reply to your email. So please show me your jokes about TRT treatment or about Niacin.

Mark my words: the grant will NOT go to a doctor who supports the auto immune theory. About a few months we will know that I am right. Daveman used to be neutral about desens, but because of you he also became negative about it. You 2 are admins. You should be a bit neutral. But you are not. And why? It's all about that email. Read your own posts about desens before you became angry. We gave a lot of money! So personal matters shouldn't count!
« Last Edit: June 20, 2013, 09:41:50 PM by Vandemolen »
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

demografx

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Re: This may seem like a familiar place.
« Reply #909 on: June 20, 2013, 09:53:54 PM »
Mark my words: the grant will NOT go to a doctor who supports the auto immune theory.

I ask you, kindly, Van, for the 2nd time: why do Y O U  say that "the grant will NOT go to a doctor who supports the auto immune theory."

Again, I ask you to please reply.

Thank you.

edit - I have replied to your other statements at the "Desensitization Plan Begins" thread, but I refuse to reply to your accusation of a "desensitization, personal smear campaign." That is highly *insulting to me and Daveman and this Forum!

I think we have now exhausted this particular subject (scientific questioning of desensitization) repeatedly, with misunderstandings repeating themselves over and over and over.

I have nothing more to repeat.

Again, my best wishes with your desensitization -- and your health.

*But please don't malign/disparage this Forum's integrity ever again.

Thanks.




« Last Edit: June 21, 2013, 08:19:22 AM 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

demografx

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Re: This may seem like a familiar place.
« Reply #910 on: June 20, 2013, 10:26:35 PM »

[When] we do find a cure I think we won't have any excuses not to become very rich and meet on a secret island every five years.  ;D



POISers' Secret Island Retreat
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

demografx

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Re: This may seem like a familiar place.
« Reply #911 on: June 21, 2013, 07:09:26 AM »


Everybody, we can help out the research process by going here

http://tinyurl.com/k9noay9

and telling the researchers what POIS is.

What has helped you.

What makes it worse.

This is our opportunity to have a voice.

[
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

Daveman

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Re: This may seem like a familiar place.
« Reply #912 on: June 21, 2013, 08:20:01 AM »
Everybody who will make jokes about your TRT treatment, will get a ban. I am 100 % sure of that. And you only joke about desens because dr. Waldinger didn't reply to your email. So please show me your jokes about TRT treatment or about Niacin.

Mark my words: the grant will NOT go to a doctor who supports the auto immune theory. About a few months we will know that I am right. Daveman used to be neutral about desens, but because of you he also became negative about it. You 2 are admins. You should be a bit neutral. But you are not. And why? It's all about that email. Read your own posts about desens before you became angry. We gave a lot of money! So personal matters shouldn't count!

Just a note!

I want it made 100% and perfectly clear, that we have absolutely NO word or control over what the NORD MAC decides, and wouldn't want such either. Nobody here is qualified to make decisions that could lead our whole community down the wrong path.

That is precisely why we chose the NORD program, and the highly experienced and respected independant Medical Advisory Committee. The experience to assure a sure and confident direction, the respect to assure that the results will be taken seriously once they have been processed and independence to assure that real medical fact is used to guide the process.

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!

LAPOISSE

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Re: This may seem like a familiar place.
« Reply #913 on: June 21, 2013, 09:52:44 AM »
But that said...I really hope Nord will not spend 30K$ to investigate about autoimmune theory...There is no scientific base suporting this, there is a really few report of succes, and apart Wald,  all other docs, allergy specialist, etc, says it doesn't make sense...

Frankly and after discussing with many, I don't think we should focus that much on O or sex ; My POIS get worse with O but the problem is somewhere else...I think it's easier of all of us to identify a clear trigger and symtoms related but I think it's more complicated that that and we should avoid any personnal missinterpretation or the researcher will get lost.

Daveman

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Re: This may seem like a familiar place.
« Reply #914 on: June 21, 2013, 10:26:44 AM »
But that said...I really hope Nord will not spend 30K$ to investigate about autoimmune theory...There is no scientific base suporting this, there is a really few report of succes, and apart Wald,  all other docs, allergy specialist, etc, says it doesn't make sense...

Frankly and after discussing with many, I don't think we should focus that much on O or sex ; My POIS get worse with O but the problem is somewhere else...I think it's easier of all of us to identify a clear trigger and symtoms related but I think it's more complicated that that and we should avoid any personnal missinterpretation or the researcher will get lost.

If there is no scientific basis, the MAC will know it.

I have my beliefs, and gut feel about it, we are all personally invested in the perspective that most suits our symptoms, but it goes way beyond how we feel and what we think it is.

Original sufferers of diabetes or heart disease would never have imagined what the cause of their disease was. Often it doesn't "feel like" what it really is.

The NORD MAC is 100% scientific about their approach, and use a huge amount of combined experience particularly in rare disorders, which are among the most complex of all disorders.

We need to trust in them.

I would feel apprehensive about several possibilities that could arise. But if they decide to go in a specific direction, it's for a very good scientific reason.

If there are no convincing programs, it's likely they will take an approach which will lead to the best direction. I don't know, from here on in, it's in their capable hands.

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!

FornicationDENIED

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Re: This may seem like a familiar place.
« Reply #915 on: June 21, 2013, 12:30:22 PM »
How many have conducted a antibody test just AFTER orgasm like IgE ( allergy antibody), or other antibodies like IgA etc.? Anyone tested IgE before desens. ?
« Last Edit: June 21, 2013, 12:36:50 PM by FornicationDENIED »

demografx

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Re: This may seem like a familiar place.
« Reply #916 on: June 21, 2013, 12:56:28 PM »
But that said...I really hope Nord will not spend 30K$ to investigate about autoimmune theory...There is no scientific base suporting this, there is a really few report of succes, and apart Wald,  all other docs, allergy specialist, etc, says it doesn't make sense...

Frankly and after discussing with many, I don't think we should focus that much on O or sex ; My POIS get worse with O but the problem is somewhere else...I think it's easier of all of us to identify a clear trigger and symtoms related but I think it's more complicated that that and we should avoid any personnal missinterpretation or the researcher will get lost.

If there is no scientific basis, the MAC will know it.

I have my beliefs, and gut feel about it, we are all personally invested in the perspective that most suits our symptoms, but it goes way beyond how we feel and what we think it is.

Original sufferers of diabetes or heart disease would never have imagined what the cause of their disease was. Often it doesn't "feel like" what it really is.

The NORD MAC is 100% scientific about their approach, and use a huge amount of combined experience particularly in rare disorders, which are among the most complex of all disorders.

We need to trust in them.

I would feel apprehensive about several possibilities that could arise. But if they decide to go in a specific direction, it's for a very good scientific reason.

If there are no convincing programs, it's likely they will take an approach which will lead to the best direction. I don't know, from here on in, it's in their capable hands.



We are betting $33,500 that they know more than us.

Safe bet, I think.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

demografx

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Re: This may seem like a familiar place.
« Reply #917 on: June 21, 2013, 01:05:55 PM »
But that said...I really hope Nord will not spend 30K$ to investigate about autoimmune theory...There is no scientific base suporting this, there is a really few report of succes, and apart Wald,  all other docs, allergy specialist, etc, says it doesn't make sense...

Frankly and after discussing with many, I don't think we should focus that much on O or sex ; My POIS get worse with O but the problem is somewhere else...I think it's easier of all of us to identify a clear trigger and symtoms related but I think it's more complicated that that and we should avoid any personnal missinterpretation or the researcher will get lost.

For that excellent reason, LAPOISSE, we should try to maintain a relationship with the researcher once selected.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

demografx

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Re: This may seem like a familiar place.
« Reply #918 on: June 24, 2013, 03:33:03 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.



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, 03:36:30 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

demografx

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Re: This may seem like a familiar place.
« Reply #919 on: June 26, 2013, 10:06:59 AM »
[reply from Daveman to above post from Egordon 6/24/2013:]

"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 donĀ“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."
[Daveman]

« Last Edit: June 27, 2013, 09:10:48 AM 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