Author Topic: This may seem like a familiar place.  (Read 413518 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 »
Usually have major POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

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 »
Usually have major POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

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 70% 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 »
Usually have major POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

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 70% 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 »
Usually have major POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

demografx

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Re: 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
Usually have major POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

demografx

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Re: 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.

[
Usually have major POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

Daveman

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Re: 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!