Author Topic: This may seem like a familiar place.  (Read 394554 times)

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.
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 #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.
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 #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 »
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 #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 »
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 #920 on: July 02, 2013, 07:38:21 PM »

You have received more than just a few applications for your POIS grant!!! These applications are SERIOUS!!

You've got experienced researchers who want to understand POIS!! They're willing to do the work -- they actually WANT to do the work!! The dedication comes right through their applications, loud and clear.

To me, this is the happiest news ever since the forums started in 2007! :) :) :)
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.

eur79m

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Re: This may seem like a familiar place.
« Reply #921 on: July 11, 2013, 10:54:13 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.

I have not been active on this forum for a long time and I was not able to contribute financially to the fund but I am fighting hard to gain some insights into POIS etiology and potential treatment/cure. My situation is special insofar as I believe that my POIS is caused by a physical trauma (breaking the blood/testis barrier) of my right testicle, resulting in continuous pain and 24/7 POIS. This hypothesis lends itself perfectly for testing it by removing the suspected cause... which is what I am trying to have done (call it the 'half-animus' solution ;)). The trouble is finding a physician willing to do the surgery.

To come back to Lapoisse's assurance that POIS is NOT autimmune related, I on the other hand am to 99% sure that it is. Like all of you I cannot provide any supporting evidence other than my own situation / experience but I am trying to change that. Currently I am undergoing a placebo controlled immunemodulatory therapy, sounds fancy, is very simple. I take one pill every day for 7 weeks, 6 weeks I am given a placebo, 1 week it will be Prednisone. So far I am in the 4th week and no results but I am very optimistic. Is there still nobody else on this forum who has ever tried Prednisone or even Dexamethasone?http://en.wikipedia.org/wiki/Glucocorticoid

Only yesterday I looked into the wikipedia article on 'Chronic Fatigue Syndrome' (CFS) and was extremely surprised on how well it fit my situation! Of course it does not cover the 'Post Orgasmic' part or my testicle pain but besides that it perfectly describes my experience and situation. I wonder why not more references are made here to CFS or attempts to reconcile any research that has been done so far on CFS with POIS? I would even go as far and throw POIS, CFS and Fibromyalgia all together because I suspect the same underlying immune mediated mechanism (not cause). Just google for 'fibro fog', which is very much the same as most of us are experiencing. I wish I had read the CFS article earlier, it is very well written and would have helped a lot if I had referred to it the first day I stepped into a doctors office... Check it out on wikipedia http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome or scan over my highlighted wikipedia PDF version, with the highlights referring to the points most pertinent to my situation / medical system experiences https://mega.co.nz/#!SRkngK7L!LTpiJSIboNc7EuHazgHiJEufZTFhlHf0OR4ED4eu3lQ

BTW, I am not allergic to my own semen and both serum Anti-Sperm-Antibody (ASA) as well as sperm Mixed Antiglobulin Reaction (MAR) were negative. In the developed country I am living in it was not possible to obtain an Immunobead Test (IBT).

Stef

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Re: This may seem like a familiar place.
« Reply #922 on: July 11, 2013, 07:18:51 PM »
Warmest greeting to all!

A guest blogger (i.e. a patient with a rare disorder) wrote a "guest" blog for NORD.  I had the pleasure of meeting this amazingly brave young woman at the Boston Marathon this past April  (the "infamous" Boston Marathon -- where an incredibly horrible act of evil took place).

I think you will all appreciate her blog --
http://blog.rarediseases.org/an-ordinary-day/

If you feel up to it, show her your support by leaving a comment on the blog page. All emails and names are confidential.

Stef


« Last Edit: July 11, 2013, 08:37:06 PM by demografx »

demografx

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Re: This may seem like a familiar place.
« Reply #923 on: July 11, 2013, 09:31:05 PM »
Warmest greeting to all!

Warmest greeting back, Stef!  :)
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 #924 on: July 15, 2013, 08:34:46 PM »

I've actually put my work on my summary of the member case symptoms and treatments on hold. I have to focus on other things for a while.  I'll give you the link to what I've done so far in case anyone is curious or wants to continue where I left off:

https://sites.google.com/site/poiscompilationsbyvm/


Vincent M, excellent start!
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 #925 on: July 21, 2013, 01:26:23 AM »


this great news. can i post it on the other forum.


Sure! :)

CertainlyPOIS and others: feel free to post any POIS news anywhere! The more sufferers we reach the better it is for everyone.

Demo
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 #926 on: July 21, 2013, 01:32:04 AM »

what is the best place to share my symptoms... the place where my info will be taken into account and added to the database of facts? thank you...

Use this link, and post there, thanks:
http://poiscenter.com/forums/index.php?topic=81.0

This can help our POIS Research Grant reviewers and medical researchers with this information. Thanks.
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 #927 on: July 25, 2013, 02:25:33 PM »



Just coincidentally, today or yesterday maybe it was, another $100 donation came in.

Great news and great going to the donor. This donation will apply to next year's pot, but it will apply, and will make the load smaller next year.

Donations from here on will very likely be leveraged, that is, with the attention and advance brought on by the first research program, we will start to see more interest from outside in supporting something "more real".

Thanks again donor.

« Last Edit: July 25, 2013, 03:42:08 PM by demografx »
WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

demografx

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Re: This may seem like a familiar place.
« Reply #928 on: July 25, 2013, 02:44:46 PM »
Thank you, donor!!
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 #929 on: July 31, 2013, 08:37:06 PM »

The research that's been started by this group gives a glimmer of hope to all here with POIS.



Excellent news on the researcher front. Well done all involved !


Colm, thanks for your research support!


« Last Edit: August 04, 2013, 08:14:48 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.