Author Topic: Official Desensitization plan Begins!  (Read 151125 times)

Egordon

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Re: Official Desensitization plan Begins!
« Reply #345 on: July 27, 2013, 05:35:12 PM »

The silent (gagged) majority speaks the loudest. Those for whom it didn't work. And I'm afraid you know little about reaserch. There are many ways to  non-anecdotally demonstrate success. If not through blood tests and markers, then through properly constructed cross questioning and CONTROL GROUPS. Any properly trained researcher could pick a million holes in the desens reasearch to date.

EGordon. In case you didn't get it, THIS SITE DOES NOT SUPPORT DESENS
NO MORE ABOUT DESENS.


In a certain sense, you're right -- i don't know a huge amount about research. But I am a reasonable and well educated, and it's pretty clear to me that, for patients with primarily cognitive symptoms, the impact of any treatment is going to be incredibly difficult to measure. (Especially since we don't know the exact mechanism by which the symptoms are created.) Waldinger's study discovered POIS as a disorder. Even you must recognize the ridiculousness in suggesting that his study is a failure because it declined to objectively demonstrate improvement in a disorder when, at the outset, he wasn't even sure that disorder existed. 

Also the idea that we can infer that desens is ineffective because not every study participant was highlighted in the paper is highly unscientific. What if they simply were on a different treatment regime? What if they hadn't finished their treatments at the time of publication? There are a host of inferences that you could draw from his failure to include them in the study. I don't think you've chosen the most plausible one.

EGordon. In case you didn't get it, THIS SITE DOES NOT SUPPORT DESENS
NO MORE ABOUT DESENS.

Its good you finally said as much rather than  continuing your pretenses to objectivity. I've got to point out, though, that your current agenda is still entirely unsupported by any kind of published scientific evidence.
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 #346 on: July 27, 2013, 05:46:17 PM »

You've been around on these forums for quite some time, so you MUST know that there have been several members who have posted about being refused by renowned allergists for this treatment, members who even sought POIS related investigators. Some of these allergists and investigators have sited the very dangers that you deny exist. Do a search on both NSF AND this forum, and you'll easily find them. It's just that it hasn't been convenient for you.

It's not going to matter what we say, or what anyone says, if there were a panel of experts of 100 investigators you wouldn't believe them.

Also since we are into askiing for proof. Where's your proof (not subjective) that the desens. procedure is safe. Two or three cases in dozens don't cut it


Im skeptical, as you would be, because what you're saying does not jibe with my experience. I've never claimed to know whether desens is safe -- and, quite frankly, I don't know. But the claims that desens is ineffective are often coupled with claims that it is unsafe. And, as I know for a fact that one of those statements is false (in my experience, desens IS unquestionably effective), I can't help but suspect that the idea they are both premised on is untrue.

The idea that I'd be skeptical of your assertions if they were being made by a panel of experts is WAY off base. I don't have any kind of agenda. And as someone undergoing desens, i'm ESPECIALLY interested in any credible evidence that it poses a threat to my health. But no such evidence has been presented. There are no peer-reviewed papers to consider. There are no doctors who have gone on the record, and who we can vet. There's just your assertion that we should take your word for it. And in light of that lack of evidence, i'm weighting my personal experienced more heavily than your unsourced assertions.
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 #347 on: July 27, 2013, 05:52:43 PM »

The silent (gagged) majority speaks the loudest. Those for whom it didn't work. And I'm afraid you know little about reaserch. There are many ways to  non-anecdotally demonstrate success. If not through blood tests and markers, then through properly constructed cross questioning and CONTROL GROUPS. Any properly trained researcher could pick a million holes in the desens reasearch to date.

EGordon. In case you didn't get it, THIS SITE DOES NOT SUPPORT DESENS
NO MORE ABOUT DESENS.


In a certain sense, you're right -- i don't know a huge amount about research. But I am a reasonable and well educated, and it's pretty clear to me that, for patients with primarily cognitive symptoms, the impact of any treatment is going to be incredibly difficult to measure. (Especially since we don't know the exact mechanism by which the symptoms are created.) Waldinger's study discovered POIS as a disorder. Even you must recognize the ridiculousness in suggesting that his study is a failure because it declined to objectively demonstrate improvement in a disorder when, at the outset, he wasn't even sure that disorder existed. 

Also the idea that we can infer that desens is ineffective because not every study participant was highlighted in the paper is highly unscientific. What if they simply were on a different treatment regime? What if they hadn't finished their treatments at the time of publication? There are a host of inferences that you could draw from his failure to include them in the study. I don't think you've chosen the most plausible one.

EGordon. In case you didn't get it, THIS SITE DOES NOT SUPPORT DESENS
NO MORE ABOUT DESENS.

Its good you finally said as much rather than  continuing your pretenses to objectivity. I've got to point out, though, that your current agenda is still entirely unsupported by any kind of published scientific evidence.

What Has to be handed to Waldinger, is that he put POIS on the map as a disorder. There is a problem however in that a good majority of doctors and allergist don't find his research compelling enough to "take the risk". You have found one, and that's good for you.

I insist that Dr. Waldinger may not be all that far away from the real problem. It's the specific diagnosis and his solution that I have grave doubts about.

You Say:
"There are a host of inferences that you could draw from his failure to include them in the study. I don't think you've chosen the most plausible one."

We don't all have the same information.
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!

Daveman

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Re: Official Desensitization plan Begins!
« Reply #348 on: July 27, 2013, 06:10:29 PM »

You've been around on these forums for quite some time, so you MUST know that there have been several members who have posted about being refused by renowned allergists for this treatment, members who even sought POIS related investigators. Some of these allergists and investigators have sited the very dangers that you deny exist. Do a search on both NSF AND this forum, and you'll easily find them. It's just that it hasn't been convenient for you.

It's not going to matter what we say, or what anyone says, if there were a panel of experts of 100 investigators you wouldn't believe them.

Also since we are into askiing for proof. Where's your proof (not subjective) that the desens. procedure is safe. Two or three cases in dozens don't cut it


Im skeptical, as you would be, because what you're saying does not jibe with my experience. I've never claimed to know whether desens is safe -- and, quite frankly, I don't know. But the claims that desens is ineffective are often coupled with claims that it is unsafe. And, as I know for a fact that one of those statements is false (in my experience, desens IS unquestionably effective), I can't help but suspect that the idea they are both premised on is untrue.

The idea that I'd be skeptical of your assertions if they were being made by a panel of experts is WAY off base. I don't have any kind of agenda. And as someone undergoing desens, i'm ESPECIALLY interested in any credible evidence that it poses a threat to my health. But no such evidence has been presented. There are no peer-reviewed papers to consider. There are no doctors who have gone on the record, and who we can vet. There's just your assertion that we should take your word for it. And in light of that lack of evidence, i'm weighting my personal experienced more heavily than your unsourced assertions.

Your doctor hasn't gone on record either, I'm sure he wouldn't dare!

There are agendas behind many assertions of success with desens. Your case is not one of them, and I am very happy for you. I know what it's like to be "POIS free".

It would be WONDERFUL if we could find evidence that desens is safe and effective. But there is NONE. You are feeling better, and as wonderful as that  is, it's not evidence for all.

You have success with desens. I have success with niacin. If people ask about niacin, I tell them, but don't propose niacin as the the method to cure POIS. Beyond that we know that niacin doesn't work for everyone.

The situation is that you can try niaicin, and you know in a week if it works or not. With desens, you don't know for AT LEAST a year. And most of the cases I have heard, suffer during the treatment.

It's such a shame. To some extent it's open to abuse. There are unscrupulous doctors out there who are willing to take on a client with a treatment for a year without having to demonstrate "success". No direct implications of course. But it's another worry of mine for all of those who are out there and looking for someone willing to do the treatment.

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: Official Desensitization plan Begins!
« Reply #349 on: July 27, 2013, 11:54:02 PM »

You have success with desens. I have success with niacin. If people ask about niacin, I tell them, but don't propose niacin as the the method to cure POIS. Beyond that we know that niacin doesn't work for everyone.


Same goes for my phenomenal success with TRT.

All I know is that it works for demografx.

And it's too risky (possible inability to ever have children) for many younger people.


« Last Edit: July 28, 2013, 02:40:14 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

FloppyBanana

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Re: Official Desensitization plan Begins!
« Reply #350 on: August 15, 2013, 12:42:13 PM »
This link shows a US medical professional David Y. Josephson, MD, FACS describing POIS as "a true auto-immune response" Can men be allergic to their own semen? He says "Yes". He also advises that Hyposensitisation is an option for treatment (as well as NSAIs and Anti-depresants).

http://on.aol.com/video/post-orgasmic-illness-syndrome-explained-517640680

FB
30 years of POIS. Mytelase after O with Iceman breathing technique.

Daveman

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Re: Official Desensitization plan Begins!
« Reply #351 on: August 15, 2013, 05:06:27 PM »
This link shows a US medical professional David Y. Josephson, MD, FACS describing POIS as "a true auto-immune response" Can men be allergic to their own semen? He says "Yes". He also advises that Hyposensitisation is an option for treatment (as well as NSAIs and Anti-depresants).

http://on.aol.com/video/post-orgasmic-illness-syndrome-explained-517640680

FB

He may be partly right, but FB...IT'S NOT AN ALLERGY!

Auto-immune MAYBE. Don't get confused!

Nobody knows, not even this guy. It's an opportunity to be in the public eye.

See his picture there on the big screen? WOW.

When you see the REAL research, I think you'll be impressed!

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!

Vincent M

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Re: Official Desensitization plan Begins!
« Reply #352 on: September 22, 2013, 06:28:25 PM »
I still don't see the validity of his tests:
1) Sperm, semen, shouldn't be on the other side of the blood barrier. It is likely to react with anyone, not just someone with POIS. We have seen some with POIS for whom it does not react. I am positive we would see people without POIS for whom it would react. An allergist should really know that. I suppose he is going on Dr. Waldinger's word!!
2) Semen contains many substances. Testing with sperm is like testing with "soup". You can't say you are allergic to chicken because you tested positive to chicken soup. And if you use chicken soup to desensitize with, you are potentially creating antibodies to things that you didn't have before like potatoes, onions, pepper, whatever!

Sorry to add to this so late, but Daveman's statement that there was a blood barrier for semen, as well as for sperm, piqued my interest. I've read of the testis blood barrier previously, but never of a blood barrier for the prostate and other organs/glands that produce and store the rest of semen. So I googled "prostate blood barrier" and found this study from 2000:

J Urol. 2000 May;163(5):1591-4.
A blood-prostate barrier restricts cell and molecular movement across the rat ventral prostate epithelium.
Fulmer BR, Turner TT.
Source
Department of Urology, University of Virginia Health Sciences Center, Charlottesville, Virginia, USA.
Abstract
INTRODUCTION:
Blood-epithelial barriers have been described in the testis and epididymis, but the possibility of such barriers in other regions of the male genitourinary tract has received little investigation. The purpose of this study was to use in vivo micro-puncture to determine if the blood-epithelial barrier exists in the rat ventral prostate. In addition, using a model of prostatic inflammation, we sought to examine the effect of inflammation on the passage of blood borne molecules and leukocytes into the prostatic ductal lumen.
CONCLUSIONS:
Our findings demonstrate a blood-prostate barrier in the rat ventral prostate with characteristics similar to the blood-testis barrier. This blood-prostate barrier is not affected by LPS-induced acute inflammation. Further, this persistent barrier apparently restricts the passage of leukocytes into prostate DF even in the presence of pronounced interstitial inflammation. This observation may help to explain the observation that expressed prostatic secretions in human males are often free of leukocytes in clinical prostatitis.
http://www.ncbi.nlm.nih.gov/pubmed/10751894

There has probably been other research on this in the past 13 years since that study, but this is relevant to the autoimmune discussion I think.
« Last Edit: September 22, 2013, 06:38:39 PM by Vincent M »
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

Vandemolen

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Re: Official Desensitization plan Begins!
« Reply #353 on: October 14, 2013, 04:56:40 PM »
For the first time I had 2 injections at once. One in my left arm and one in my right arm. So I had a double shot. So after the max dillution the double shot is the next move in my desens program.
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.

fidalgo

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Re: Official Desensitization plan Begins!
« Reply #354 on: October 15, 2013, 01:22:22 PM »
For the first time I had 2 injections at once. One in my left arm and one in my right arm. So I had a double shot. So after the max dillution the double shot is the next move in my desens program.

And how are you?

Vandemolen

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Re: Official Desensitization plan Begins!
« Reply #355 on: October 16, 2013, 04:56:28 PM »
I was just yesterday, so I can't tell if it had effect. I have 1 more year to go...
But normally 1 arm hurts for 1 day, not 2 arms.  :-[
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.

fidalgo

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Re: Official Desensitization plan Begins!
« Reply #356 on: October 20, 2013, 08:44:18 PM »
I was just yesterday, so I can't tell if it had effect. I have 1 more year to go...
But normally 1 arm hurts for 1 day, not 2 arms.  :-[
ri

But how are your POIS? Are You almost cured?

I don't know if you remember that I made a lot of question to you about desens in last year. I start mine in December. I have some improves, my throat, before, inflamate every month. This year I think I have only 2 inflamation. I have much less symptons since after O, but I'm not sure if I have the same improves in the next day. My mood improve, I can do more exercises, my concentration improves....
But what I want to say is that I was expecting more. I still have all symptoms with some improves. I'm happy with this improves, but I thougth that I would be better.... Because of that I ask about your POIS, since it you having done the desens for much time...

Vandemolen

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Re: Official Desensitization plan Begins!
« Reply #357 on: October 22, 2013, 06:44:02 PM »
Desens works after a few months. So I think you have to be patient. I am on desens 2,5 year. I have 70 % less symptoms. My POIS is gone on day 1 after a few hours. Now I have more problems with my prostate and UTI than POIS.
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.

Egordon

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Re: Official Desensitization plan Begins!
« Reply #358 on: October 26, 2013, 01:40:02 AM »
Desens works after a few months. So I think you have to be patient. I am on desens 2,5 year. I have 70 % less symptoms. My POIS is gone on day 1 after a few hours. Now I have more problems with my prostate and UTI than POIS.

Van,

I know your doctor is employing some new and exciting desens techniques, but your treatment does seem to have taken quite some time. How often do you go in? Isn't it typical for desens to take about 2 years? (That's the case in America, anyway.)

The things your doctor is trying (concentrations above 1:1; 2 injections of the same solution in different arms) are interesting, but my doctor is somewhat skeptical that they'd work and has been reluctant to try them on me. Do you know how normal these procedures are in Europe?

All of the desensers really appreciate hearing about your therapy. Thanks for sharing and giving input!



Fidalgo,

With time and patience, desens is very effective but it's unlikely to ever eliminate your symptoms entirely. I've been undergoing treatments for about a year and a half now, and while it hasn't completely eliminated POIS, it has gotten me to a point where my symptoms are essentially entirely manageable without medication (NSAIDs) or niacin; I have light symptoms for much of Day 1 and am essentially symptom-free on Day 2.

Like Van, I'd say that severity of my disorder has improved by about 70%. It's a huge improvement but also leaves just enough symptoms behind to make one a bit frustrated -- especially given some of the promises being made regarding it (90% improvement) when it first came out.

Best of luck and keep us updated!

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!

Vandemolen

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Re: Official Desensitization plan Begins!
« Reply #359 on: October 28, 2013, 06:23:47 PM »
Egordon,

Every type of desens in The Netherlands is 3 to 5 years. I am on desens 2,5 years. But I my treatment is a bit quicker than the first group. But the new patiens have a quicker treatment than me. I think my desens therapy is done about 1 to 1,5 years.

No I never heard about injections in 2 arms. But it went well. I hope that this will help.

In the papers of prof. dr. Waldinger you can read that 1 patient has 90 % improvement, but also a patient of I think 40 or 60 %. It's not the same for everybody. 70 % less symptoms is great. Let's hope that in the next months we both reach 90 %.
Good luck with your treatment.
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.