Post Orgasmic Illness Syndrome (P.O.I.S.)

POIS Cause/Treatment Discussions => Auto-Immune Causes and Treatments => Topic started by: Daveman on March 28, 2011, 06:41:27 PM

Title: Official Desensitization plan Begins!
Post by: Daveman on March 28, 2011, 06:41:27 PM
Van recently announced that he has just started the semen allergy desensitization treatment. Very exciting!With him and others now we should start receiving first hand information about how it feels, a little more insight into how the process is actually administered etc.

I wonder how much secrecy control there'll be with Dr. Waldinger, as I think, all of his subjects were in strict confidence during their tests and desensitizations.

Very complicated actually. We could "loose" many of our members if they are asked to maintain secrecy.

Title: Re: The Desensitization plan Begins!
Post by: demografx on March 29, 2011, 09:59:01 AM

Van recently announced that he has just started the semen allergy desensitization treatment. Very exciting!With him and others now we should start receiving first hand information about how it feels, a little more insight into how the process is actually administered etc.

I wonder how much secrecy control there'll be with Dr. Waldinger, as I think, all of his subjects were in strict confidence during their tests and desensitizations.

Very complicated actually. We could "loose" many of our members if they are asked to maintain secrecy.


Although Dr Waldinger - by virtue of having studied and pioneered this method for the last 10 years - is obviously the most knowledgeable administrator of this treatent, the practicality of repeatedly visiting him and his hospital in The Netherlands makes it difficult for some POIS sufferers, so hopefully we will learn more here about forum members' alternate experiences.
Title: Re: The Desensitization plan Begins!
Post by: Vandemolen on March 29, 2011, 05:48:38 PM
Dave, dr. Waldinger and the doctor who treated me spoke to each other about the POIS-patients abroad. They said that they are looking for a way to help the people outside The Netherlands. But they just started this. I know it's hard but we have to be patient. You have to understand that dr. Waldinger wants to work in silence. I think that's better for us too. A lot of us were impatient when there is still no POIS-paper last year. Now I understand why. That's because the doctor needed more tetst results and more POIS-patients.

If somebody wants to do the desensitization program in The Netherlands he must contact dr. Waldinger. But this will be difficult because you have to get an injection every two weeks. So the desensitization must take place in other countries.
Title: Re: The Desensitization plan Begins!
Post by: Daveman on March 29, 2011, 07:00:46 PM
Hi Van,

Good to see you. thanks for the feeback.

It also seems that you are relatively free to talk about your experience, which is good. We'll try to be patient. and it IS very exciting to see someone being treated by "THE MAN". Just from the little that you've said, you can tell that the procedure is very specific and apparantly designed for the most bang at a safe rate.

Can I steal your links to the pictures you took for this forum?
Title: Re: The Desensitization plan Begins!
Post by: Vandemolen on March 30, 2011, 03:44:48 AM
OK. You can use the pictures.
Title: Re: The Desensitization plan Begins!
Post by: Daveman on March 30, 2011, 07:19:18 AM
OK. You can use the pictures.

Better yet: links to your announcement!

http://www.thenakedscientists.com/forum/index.php?topic=6576.msg349763#msg349763

http://www.thenakedscientists.com/forum/index.php?topic=6576.msg349857#msg349857

Thanks!
Title: Re: The Desensitization plan Begins!
Post by: Vandemolen on March 31, 2011, 07:25:58 PM
Did you find that the first injection induced POIS symptoms?   (or was the sample so 'fresh' that you already had them?)
Fresh semen is better for the desensitization. So I already had POIS-symptoms.
The extra symptoms was pain in the injected arm. It's like somebody hits you all the time. After 3 days I can still feel it.
Title: Re: The Desensitization plan Begins!
Post by: Daveman on March 31, 2011, 08:12:08 PM
And so your vacations aren't going to set you back too much, delaying the second shot by 3 weeks? Or are you going to suffer any slight penalty?

Anyways, at the risk of repeating myself , I'm really excited about your therapy though, fantastic!!
Title: Re: The Desensitization plan Begins!
Post by: Vandemolen on April 01, 2011, 04:33:22 AM
And so your vacations aren't going to set you back too much, delaying the second shot by 3 weeks? Or are you going to suffer any slight penalty?

Anyways, at the risk of repeating myself , I'm really excited about your therapy though, fantastic!!

The doctor said that I could make an appointment for about 4 weeks for the next injection. But I said to him that I am going on a holiday abroad. Then the doctor said that it would be better to do the shot after my holiday. Because of the risks. In a far country in Asia they have other insects and other viruses. So it could bring problems. And the medical help is better here. The doctor said the delay is not a problem. The first months I don't get a lot of injections because my body has to get used by it. And then the shots will be bigger and more frequent. And in that period I must feel a but of comfort. The doctor said that the injections must not determine my life because POIS already did.
Thanks for your support Dave!
Title: Re: The Desensitization plan Begins!
Post by: demografx on April 02, 2011, 08:09:26 AM
And so your vacations aren't going to set you back too much, delaying the second shot by 3 weeks? Or are you going to suffer any slight penalty?

Anyways, at the risk of repeating myself , I'm really excited about your therapy though, fantastic!!

The doctor said that I could make an appointment for about 4 weeks for the next injection. But I said to him that I am going on a holiday abroad. Then the doctor said that it would be better to do the shot after my holiday. Because of the risks. In a far country in Asia they have other insects and other viruses. So it could bring problems. And the medical help is better here. The doctor said the delay is not a problem. The first months I don't get a lot of injections because my body has to get used by it. And then the shots will be bigger and more frequent. And in that period I must feel a but of comfort. The doctor said that the injections must not determine my life because POIS already did.
Thanks for your support Dave!

Very exciting, Vandemolen!! Thank you for sharing your progress with us!!
Title: Re: The Desensitization plan Begins!
Post by: Hoping on April 02, 2011, 11:34:52 AM
And so your vacations aren't going to set you back too much, delaying the second shot by 3 weeks? Or are you going to suffer any slight penalty?

Anyways, at the risk of repeating myself , I'm really excited about your therapy though, fantastic!!

The doctor said that I could make an appointment for about 4 weeks for the next injection. But I said to him that I am going on a holiday abroad. Then the doctor said that it would be better to do the shot after my holiday. Because of the risks. In a far country in Asia they have other insects and other viruses. So it could bring problems. And the medical help is better here. The doctor said the delay is not a problem. The first months I don't get a lot of injections because my body has to get used by it. And then the shots will be bigger and more frequent. And in that period I must feel a but of comfort. The doctor said that the injections must not determine my life because POIS already did.
Thanks for your support Dave!

I agree that a fresh sample seems like an important factor. Van, when he performed the intradermal test on you did he dilute the sample like Waldinger mentions in his study? When I saw Dr. Bewtra and Dr. Nguyen for my intradermal test they didn't dilute the sample at all.
Title: Re: The Desensitization plan Begins!
Post by: Vandemolen on April 02, 2011, 02:03:58 PM
I agree that a fresh sample seems like an important factor. Van, when he performed the intradermal test on you did he dilute the sample like Waldinger mentions in his study? When I saw Dr. Bewtra and Dr. Nguyen for my intradermal test they didn't dilute the sample at all.

Frozen semen also works but more slowly. Maybe the desensitization period takes more time.
The semen was diluted in both times. At the skin p.rick test and at the first desensitization. I didn't ask how much it was diluted. But I think just as in the last POIS paper of dr. Waldinger. When I looked at it it seems that the semen at the test was more diluted than at the desensitization. But I am not sure. In both times the doctor went to the lab to prepare the semen for the injection.
Title: Re: The Desensitization plan Begins!
Post by: Habibou on April 04, 2011, 11:42:49 AM
I don't know if it is there we can post, but I will do here for the moment !

I just called ImVision, the Switzerland Laboratory which "practices Intra Lymphatic Injections".
The doctor which caught the phone gave me his mail address :     m.steiner@imvision-therapeutics.com
He was really kind to answer me through the phone, and I really appreciated it ! 

I didn't say anything about our condition, but I told him I would send him a mail with Dr Waldinger's Papers...
He told me that this procedure is new and it would take 4 years to develop it ! 
There is a study in Canada in which they test those intralymphatic injections.
For the moment, they only treat Cat's allergy with Intralymphatic Injections and are seeking for others allergies now.

It would be great we also contact the Dutch Laboratory which practices Intralymphatic Injections to get more and more information about it.

The Intralymphatic injections cure from allergies in 8 weeks, I would be glad to test it for me in the first place and it could be a fast cure for our condition if it works ! 
Title: Re: The Desensitization plan Begins!
Post by: b_jim on April 04, 2011, 02:42:04 PM
I really consider the option to do it myself. But i want to see an allergist before.
I'm not stupid and I don't want to take any risks. But it looks not impossible.
Title: Re: The Desensitization plan Begins!
Post by: Vandemolen on April 04, 2011, 05:44:53 PM
If you think you could do it yourself than it must be easy for an allergist. So I think it's better to ask an experienced allergist. With the POIS-paper of dr. Waldinger it should be possible.
Title: Re: The Desensitization plan Begins!
Post by: Habibou on April 05, 2011, 09:49:09 AM
Yes, The intra lymphatic injections procedure seems definitively the best way both economically and safely/quickly, for our conditions in the long term, that's why i try to find a laboratory which is in willing to pratice it for us in a safe condition...

I guess the UCLA laboratory someone found on the forum is this one : http://www.ilitherapy.com/  ?

Today, I will call the french association of allergies specialist /immunologist, will update!
Title: Re: The Desensitization plan Begins!
Post by: b_jim on April 11, 2011, 01:17:04 AM
Thanks for your search Habibou.  8)
It would be nice to find a lab in France.
Title: Re: The Desensitization plan Begins!
Post by: Ccconfucius on April 14, 2011, 01:11:11 PM
vandemolen when you get your allergy shots you dont get like red marks on your arm like during the intradermal test.
Title: Re: The Desensitization plan Begins!
Post by: demografx on April 14, 2011, 01:30:14 PM
b_jim, your avatar is way too cool!! :)

How did you do that?
Title: Re: The Desensitization plan Begins!
Post by: b_jim on April 14, 2011, 02:50:32 PM
Ironic ?  ;D  I spent 30 seconds on Paint to do it  ;D

Remember, I made the same on the chat profil in green  :P
Title: Re: The Desensitization plan Begins!
Post by: Vandemolen on April 14, 2011, 05:25:42 PM
vandemolen when you get your allergy shots you dont get like red marks on your arm like during the intradermal test.
The red spots at the skin pr.ick test were 3 times smaller than at the desensitization.
Title: Re: The Desensitization plan Begins!
Post by: Daveman on April 14, 2011, 05:34:21 PM
By the way you can say prick prick prick here!

Title: Re: Official Desensitization plan Begins!
Post by: Habibou on May 10, 2011, 09:04:26 AM
Does Any Body else tried to contact Labs which could practice Intra-Lymphatic Injections?  :)
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on May 12, 2011, 04:49:54 PM
Today I had another injection for the desensitization. Normally the dilution of the semen is 1/10.000. But this time I had 1/1.000. Normally 1/1.000 is reached after 5 months. The doctor said that the chance of chance of complications is the biggest in the first months. But they had a good research and that's why it was possible for me to go to 1/1.000. After 3 years the dilution is 1/20.
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on May 13, 2011, 08:07:45 AM
Welcome back from your vacation!

Was/is there any effect form the procedure?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on May 13, 2011, 04:39:56 PM
Thanks.
No effect yet. The effect starts after 1 year. So in my case maybe after 7 months from now.
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on May 14, 2011, 11:38:20 AM
Ahh OK,

I was refering to POIS symptom type effects after the procedure :-)

Or maybe you can't tell because you're in POIS from collecting the sample.

Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on May 14, 2011, 01:56:47 PM
I was already in POIS.

But I could feel the injection more now. And the red spot stayed there for more than 10 hours.

I am in bad POIS now. Don't think it's because the injection. But it's because I waited too long for the O. If you know what I mean. And on day 2 of POS I had another O. I shouldn't do that anymore. It's not wise to have an O. during POIS.
Title: Re: Official Desensitization plan Begins!
Post by: Hoping on May 14, 2011, 05:18:25 PM
I was already in POIS.

But I could feel the injection more now. And the red spot stayed there for more than 10 hours.

I am in bad POIS now. Don't think it's because the injection. But it's because I waited too long for the O. If you know what I mean. And on day 2 of POS I had another O. I shouldn't do that anymore. It's not wise to have an O. during POIS.

thanks for the updates Van. when is your next allergy shot? you may want to get it while you're NOT experiencing POIS symptoms to see if the injection produces symptoms. this could be very important in determining if semen is the culprit. i know when i got my intradermal test with Dr. Bewtra with non-dilluted semen i felt POIS symptoms.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on May 14, 2011, 06:28:32 PM
Fresh semen is much better for the desensitization. That's what the doctor said. For me it would be easier if they used frozen semen. Then I only had to produce it twice a year. My next appointment is about 5 weeks. The big red spot is very clear.
Title: Re: Official Desensitization plan Begins!
Post by: Hoping on May 15, 2011, 08:47:31 PM
Fresh semen is much better for the desensitization. That's what the doctor said. For me it would be easier if they used frozen semen. Then I only had to produce it twice a year. My next appointment is about 5 weeks. The big red spot is very clear.

I totally agree with that. fresh semen seems to be important. are they not able to freeze it for you?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on May 16, 2011, 03:07:37 AM
I totally agree with that. fresh semen seems to be important. are they not able to freeze it for you?
I think they are. But the next time the semen will not be fresh. The injections are once a month. So I don't mind. If it was twice a month then it would be hard.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on May 17, 2011, 04:48:36 AM
If you do the Desensitization I was wondering what is the best. To do have no O.'s (beside before the injection). Or to have a lot's of O.'s to confront your prostate and bladder. Or will be the prostate and bladder be damaged?
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on May 17, 2011, 07:26:35 AM
If you do the Desensitization I was wondering what is the best. To do have no O.'s (beside before the injection). Or to have a lot's of O.'s to confront your prostate and bladder. Or will be the prostate and bladder be damaged?

My personal case is that the prostate swells in the 5 days post orgasm. Along with most of the equipment down there.

The vas travels up through the abdominal cavity alongside the penis on each side. These too for me swell and tend to harden suring POIS. At night it is even uncomfortable when I sleep on my side with the legs tegether.

I can't sleep on my back, so I sleep one my side, but with one leg a little behind and the other with the knee out at 90 deg to the body. A little more comfortabe.

Your doctors haven't put any restrictions on your sex? If you jave more or less, does it have any effect over the desensitization?

Title: Re: Official Desensitization plan Begins!
Post by: Habibou on May 19, 2011, 05:02:13 AM
I think this whole desensitization plan is based on very thin evidence. The allergy is a theory and not a fact yet. There was only mild improvement with desensitization in 1 patient and no improvement in the other. That to me is not very good evidence.  I'm playing devil's advocate here, but I think it's important to keep this in perspective. I'm not saying it shouldn't be tried, but we need to challenge it too. If it's true it will survive the challenge.

No, according to his paper, it was :
-90% improvement after 15 months in a case.
-60% improvement after 36 months in the other case who got PE.

That is not the same at all compare to mild/no improvement !
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on May 22, 2011, 04:59:43 AM
My personal case is that the prostate swells in the 5 days post orgasm. Along with most of the equipment down there.

The vas travels up through the abdominal cavity alongside the penis on each side. These too for me swell and tend to harden suring POIS. At night it is even uncomfortable when I sleep on my side with the legs tegether.

I can't sleep on my back, so I sleep one my side, but with one leg a little behind and the other with the knee out at 90 deg to the body. A little more comfortabe.

Your doctors haven't put any restrictions on your sex? If you jave more or less, does it have any effect over the desensitization?
Yes I noticed too that the prostate swells a few days.

No restrictions. I will ask next time.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on May 22, 2011, 05:16:56 AM
I think this whole desensitization plan is based on very thin evidence. The allergy is a theory and not a fact yet. There was only mild improvement with desensitization in 1 patient and no improvement in the other. That to me is not very good evidence.  I'm playing devil's advocate here, but I think it's important to keep this in perspective. I'm not saying it shouldn't be tried, but we need to challenge it too. If it's true it will survive the challenge.
The research didn't stop. But for now desensitization is the best proven medication. Yes it's true not everybody had a big improvement. But if for me there is 50% improvement I would be happy. Better 50 % then nothing. Of course I hope that the improvement will be 90 or 100 %. But I don't count on anything. Thought the patienst who did desensitization and had not a huge improvement this were patients with PE. And I don't have PE.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on May 25, 2011, 06:01:43 AM
Yesterday I had an O. Today is day 1. And I feel better than normal. I think I have 25 % less POIS. But I don't know in how far this is the effect of injections. Because I was eroused a very long time and then I had the O. In this case there is always less seed in the sperm. That could be a reason. And the other thing is that I just came back from a holiday from Asia (lot's of vitamin D). I will try it about a week with a quick O. I will let you know. But I can't wait to get my new injection about 3 weeks.
Title: Re: Official Desensitization plan Begins!
Post by: Willem on May 25, 2011, 11:16:19 AM
I think this whole desensitization plan is based on very thin evidence. The allergy is a theory and not a fact yet. There was only mild improvement with desensitization in 1 patient and no improvement in the other. That to me is not very good evidence.  I'm playing devil's advocate here, but I think it's important to keep this in perspective. I'm not saying it shouldn't be tried, but we need to challenge it too. If it's true it will survive the challenge.
I agree with you.  There are multi-billion dollar industries involving millions of people based on medicine with thin evidence, and in our case we only have a handful of cases.  Every effective treatment case is more like a hypothesis.  Does seem like desensitization is the best non-invasive candidate with a scientific basis. 

It would be great to have a battery of tests for our condition to determine if we really are allergic.  Since sperm is immunogenic, simply confirming an allergic response can be complicated. 
Title: Re: Official Desensitization plan Begins!
Post by: Animus on May 26, 2011, 09:31:41 PM
I think this whole desensitization plan is based on very thin evidence. The allergy is a theory and not a fact yet. There was only mild improvement with desensitization in 1 patient and no improvement in the other. That to me is not very good evidence.  I'm playing devil's advocate here, but I think it's important to keep this in perspective. I'm not saying it shouldn't be tried, but we need to challenge it too. If it's true it will survive the challenge.

No, according to his paper, it was :
-90% improvement after 15 months in a case.
-60% improvement after 36 months in the other case who got PE.

That is not the same at all compare to mild/no improvement !

I'm sorry! I wish I hadn't worded it like that... 90% improvement is quite good. And this is very significant.
Title: Re: Official Desensitization plan Begins!
Post by: biocentric on May 27, 2011, 04:49:16 PM
van,
sorry to be a pain but could you list the stages/injection strengths so far and how long you had at each stage
THANKS!!
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on May 28, 2011, 06:02:05 AM
Yesterday I had an O. Today is day 1. And I feel better than normal. I think I have 25 % less POIS. But I don't know in how far this is the effect of injections. Because I was eroused a very long time and then I had the O. In this case there is always less seed in the sperm. That could be a reason. And the other thing is that I just came back from a holiday from Asia (lot's of vitamin D). I will try it about a week with a quick O. I will let you know. But I can't wait to get my new injection about 3 weeks.
An O. again. And again I think 25% less symptoms. Mainly less rash in my mouth and nose.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on May 28, 2011, 06:06:04 AM
van,
sorry to be a pain but could you list the stages/injection strengths so far and how long you had at each stage
THANKS!!
I didn't had the normal procedure. Because I made in 1 time a step in the plan. Normally you begin with 1/10.000. After 5 months it's 1/1.000. I don't know the scheme between those 4 months.
Title: Re: Official Desensitization plan Begins!
Post by: biocentric on May 29, 2011, 07:17:02 AM
van,
sorry to be a pain but could you list the stages/injection strengths so far and how long you had at each stage
THANKS!!
I didn't had the normal procedure. Because I made in 1 time a step in the plan. Normally you begin with 1/10.000. After 5 months it's 1/1.000. I don't know the scheme between those 4 months.

but what have you had? what did you begin with? where you at now? thanks
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on May 29, 2011, 05:14:10 PM
but what have you had? what did you begin with? where you at now? thanks
First time: 1/10.000. Second time 1/1000. I had 2 injections.
Title: Re: Official Desensitization plan Begins!
Post by: biocentric on May 30, 2011, 05:42:28 AM
thanks
Title: Re: Official Desensitization plan Begins!
Post by: Starsky on June 07, 2011, 12:40:52 PM
Is somebody doing this desensitization plan too but lives outside Netherlands?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on June 08, 2011, 02:35:57 PM
I m. for a few hours (my plan was to have arousal but nog O.). Not so smart. Look what happened: I had a rash on the hand which touched the sperm. For me this is another prove that in my case it's about allergies. Of course maybe there are other causes too.

http://imageshack.us/photo/my-images/148/img2506u.jpg
Title: Re: Official Desensitization plan Begins!
Post by: Starsky on June 09, 2011, 07:52:03 AM
Is there a big danger that the allergy due to this programm gets worse?
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on June 09, 2011, 08:30:46 AM
Is there a big danger that the allergy due to this programm gets worse?

Theoretically no. It's a common method of treating allergies.

As has been mentioned, the most dangerous part is avoiding system-wide shock shortly after application of the injection. Which is minimal although very dangerous IF it happens. Doctors are prepared to address the onset of shock.

Title: Re: Official Desensitization plan Begins!
Post by: rock27 on June 09, 2011, 02:33:48 PM
Is there a big danger that the allergy due to this programm gets worse?

Theoretically no. It's a common method of treating allergies.

As has been mentioned, the most dangerous part is avoiding system-wide shock shortly after application of the injection. Which is minimal although very dangerous IF it happens. Doctors are prepared to address the onset of shock.




This still sounds strange to me. Why can we get a shock? We have been exposed to our semen hundreds of times before and never gotten a shock. I am not a doctor and this is not medical advice, but still it sounds strange.
Title: Re: Official Desensitization plan Begins!
Post by: Willem on June 09, 2011, 05:56:42 PM
I agree Rock.  If there is a risk of shock, then we face that risk continuously.  If we've lived through years of POIS, then it seems unlikely that exposure somewhere else on the body will result in shock and death.  Just MHO as well. 
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on June 09, 2011, 06:46:49 PM
Yeah, that part I don't understand very well either.

Also I don't understand why stickin' yourself in the arm or under the tongue is any different than having it in your body from orgasm.

I guess if there's a difference, the shock reaction is also potentially valid within the "new scheme".

Title: Re: Official Desensitization plan Begins!
Post by: Willem on June 09, 2011, 09:24:36 PM
Yeah, different organs or sites are employed by the body to introduce allergens to the immune system, so that might increase the risk of shock, but then the concentration is no where near the "real stuff". 



Title: Re: Official Desensitization plan Begins!
Post by: Daveman on June 10, 2011, 07:24:43 AM
"Go figure" in any case.   :)  :)
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on June 16, 2011, 09:10:19 AM
Today I had another injection. Last time the dilution was 1/1000. Today it was 1/200. About 4 weeks it will be 1/70. At 1/70 there will be a big improvement. So I am looking forward for that appointment.  Normally you achieve 1/70 after 1 year. I will do that after 4 months.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on June 16, 2011, 09:17:14 AM
A time ago they injected a person who didn't had POIS, he had no reaction. In the Netherlands it is not allowed to inject a person with semen of another person.

I showed the picture of my hand. The doctor said it is the same reaction of people who have a food allergy. He said that inside the body there are the same red spots.

And the doctor said it is good to have O.'s in a regular basis. So it can trigger the body. It helps the injections.
Title: Re: Official Desensitization plan Begins!
Post by: Starsky on June 16, 2011, 10:43:50 AM
Why are you doing it so quick? What do you think about self-administration of these injections?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on June 16, 2011, 11:37:49 AM
Why are you doing it so quick? What do you think about self-administration of these injections?
Because I want to get better. Why waiste time?

Do you mean doing the injections yourself? I don't think it's wise. There was a man who had a shock and had to go to the hospital.
Title: Re: Official Desensitization plan Begins!
Post by: Ccconfucius on June 16, 2011, 12:24:17 PM
Why are you doing it so quick? What do you think about self-administration of these injections?
agree with vandemolen, with other allergies, the shock is expected during treatment, if you get that shock and not prepared it can mean death.
Title: Re: Official Desensitization plan Begins!
Post by: Habibou on June 16, 2011, 02:02:47 PM
How do you know liquid anti histamine doesn't exist?  ???

I have seen on internet it existed for children under 12 who cant manage to eat tablets ! so why not give it a trial?

Then, you mean, we could try to inject some liquid anti histamine thanks to a catheter?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on June 16, 2011, 05:40:57 PM
This still sounds strange to me. Why can we get a shock? We have been exposed to our semen hundreds of times before and never gotten a shock. I am not a doctor and this is not medical advice, but still it sounds strange.
There was 1 POIS-patient who had a shock after the injection. He had to go to the first aid hospital. That's the reason why the dillution was high. Now there are more patients who get the injections and no shock. That's why my route is very quick.

And semen on your body is not like in the vessels. At every  desensitization there is always a risk of a shock. That also counts for hay fever desensitization.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on June 16, 2011, 05:43:52 PM
How do you know liquid anti histamine doesn't exist?  ???

I have seen on internet it existed for children under 12 who cant manage to eat tablets ! so why not give it a trial?

Then, you mean, we could try to inject some liquid anti histamine thanks to a catheter?
I think this is another topic. But it could be that there is a liquid anithistamine. But the problem is to get it into the urethra. And if you managed the liquid will not reach the prostate. The only way to do this is through an injection. But this is not the injections I am having and where this topic is about.
Title: Re: Official Desensitization plan Begins!
Post by: Starsky on June 19, 2011, 10:29:56 AM
Do you know pehaps if the two first guys completed the desensitization or  are they stil desesensitized. I would like to know how long this effect will last.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on June 19, 2011, 04:53:39 PM
Do you know pehaps if the two first guys completed the desensitization or  are they stil desesensitized. I would like to know how long this effect will last.
No I don't know. The paper came out in January. So I think they are at 2 years now. I think they stilll get injections, because it's 3 to 5 years.
I think you have to wait at least 10 years to know how long the effects will last. Sometimes at hay fever after a periode they have to start the desensitization again.
Title: Re: Official Desensitization plan Begins!
Post by: Starsky on June 20, 2011, 10:22:09 AM
How many people are at the moment in this desensitization plan?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on June 20, 2011, 08:22:16 PM
How many people are at the moment in this desensitization plan?
I don't know. I can ask the next time I go there.
Title: Re: Official Desensitization plan Begins!
Post by: Willem on July 21, 2011, 12:24:26 PM
Vandemolen, Are you documenting your treatment schedule and your body's response?  Will you be able to share that with us after the conclusion of the study/treatment program?  I'm currently doing sublingual immunotherapy (SLIT) at home for about 3 months and would be very interested to see how my reactions at different concentrations track with SCIT.  I'm currently at 2 drops of 1:9,000 dilution.  I'll share all of my observations publicly after running the full course. 

I guess my main question is, does the body flip a switch or is the change gradual?  You mentioned that people don't normally see improvements until higher concentrations (~1:100).  It seems to me that once the immune system decides that semen is benign, improvement should be very rapid and noticeable.  Thanks.
Title: Re: Official Desensitization plan Begins!
Post by: Habibou on August 31, 2011, 08:50:26 AM
I went to Dr Goldmeier for an appointment and the Intradermal test with my own semen and it turned Positive : I got a spot of 20 mm diameter and a thickness of 5 mm !  The area around was totally red. I got it from the immunologist and he said I was definitively positive to my own semen !

Even the skin prick test was already positive and the intradermal was done with a dilution of 1/40 000
(here is the result in pictures, I do not know if we can see it well)
 :)
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on August 31, 2011, 11:39:54 AM
Thanks for the pix. We'll be anxious to see any follow ups.
Title: Re: Official Desensitization plan Begins!
Post by: rock27 on September 09, 2011, 03:21:29 PM
I was wondering about doing intradermal test again after desensitization. When the red spot is smaller than the intradermal test before desensitization, it is scientific proof.
Title: Re: Official Desensitization plan Begins!
Post by: Ccconfucius on September 09, 2011, 09:00:04 PM
i think that is how allergist determine next concentration to give patients, and wheter desensitization is working. people like vandemolen will have confirmed that by now since he is rapidly increasing his concentration without much discomfort.
Title: Re: Official Desensitization plan Begins!
Post by: johan on September 27, 2011, 10:24:24 AM
Fresh semen is much better for the desensitization. That's what the doctor said. For me it would be easier if they used frozen semen. Then I only had to produce it twice a year. My next appointment is about 5 weeks. The big red spot is very clear.

Waldinger used frozen and defrosted semen for the skin test. Could the use of a fresh sample instead affect the result in your opinion? I guess that in any case it wouldn't show a weaker reaction. (I don't have a freezer at present.)

Thanks,
Johan
Title: Re: Official Desensitization plan Begins!
Post by: Ccconfucius on September 27, 2011, 12:19:54 PM
Fresh semen is much better for the desensitization. That's what the doctor said. For me it would be easier if they used frozen semen. Then I only had to produce it twice a year. My next appointment is about 5 weeks. The big red spot is very clear.

Waldinger used frozen and defrosted semen for the skin test. Could the use of a fresh sample instead affect the result in your opinion? I guess that in any case it wouldn't show a weaker reaction. (I don't have a freezer at present.)

Thanks,
Johan

I did my test with fresh semen, and got a reaction, if you only have the option of fresh semen,  you are fine. 
Title: Re: Official Desensitization plan Begins!
Post by: Ccconfucius on September 27, 2011, 12:23:43 PM
I got my first shot of desalinization today at 1;40000, i was already in pois.   I didn't get the arm pain vandemolen got may the concentration is to low.
I will be going to his office every week for my shots and probably going to up it to two times a week ( he said that will be faster).   He is going to be using frozen instead of fresh.
Title: Re: Official Desensitization plan Begins!
Post by: Starsky on September 29, 2011, 03:59:52 AM
You are by Dr Waldinger?
Title: Re: Official Desensitization plan Begins!
Post by: Ccconfucius on September 29, 2011, 09:39:39 AM
I found  someone in the US willing to do it.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on December 19, 2011, 05:32:12 PM
I am back at the turn of the tide. I come with good news.

Desensitization plan works for me. I have 40-50% less symptoms. I used to have 4 days of POIS. Now it is 2 days. And sometimes only 1 day. I began with a dillution of 1/10.000. Then 1/1000, 1/200, 1/70, 1/50, 1/30, 1/15. And today it was 1/5. The good news is that the max was 1/20. Now there was a meeting with allergists in The Netherlands. They said the dillution can be lower. Now the max is 1/2. Almost pure semen. When I went from 1/50 to 1/30 I had pain in my arms for 6 weeks. And I had a red mark on my arm and under my armpit. I thought it was blood-poisoning, because at another hospital an intern took some blood from my arm and she couldn't do it with 1 shot. But the doctor said this was just the reaction of the desensitization. Last time I had no reaction at all from the injection, no little red mark. So that's why today we went to 1/5. And today my arm really hurts again. :(

The other good news is that the Dutch health insurance are willing to pay for their clients. So that's why a few allergists are willing to do the desensitization. Next week there will be a test of 2 patients of 2 different allergists at the clinic where I go. So hopefully all the POIS-patients in The Netherlands can be helped in 2012 immediately!
Title: Re: Official Desensitization plan Begins!
Post by: b_jim on December 20, 2011, 03:23:51 AM
Here the plans :

(http://img190.imageshack.us/img190/8144/plandy.jpg)

Title: Re: Official Desensitization plan Begins!
Post by: rock27 on December 20, 2011, 12:21:04 PM
Great news Van!
Title: Re: Official Desensitization plan Begins!
Post by: Starsky on December 20, 2011, 05:44:18 PM
I think he ment 1:15.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on December 20, 2011, 06:21:26 PM
It was 1/5. Sorry, I changed the post.
Title: Re: Official Desensitization plan Begins!
Post by: Nightingale on December 20, 2011, 06:22:38 PM
Thanks for the update!  This means so much to me to hear this!
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on December 20, 2011, 06:29:01 PM
Thanks Nightingale. I feel great. I think that I can have 3 to 4 O's in a week without being very sick. The main thing is that the flu like symptoms are almost gone for 100%. The only thing is that the there is still agitation in the intestines. And my muscles are stiff. And I still have that rushed feeling. But maybe that will go after a holiday. :)
Title: Re: Official Desensitization plan Begins!
Post by: Willem on December 20, 2011, 07:17:32 PM
Very happy for you Vandemolen!  It's great to have an official desens patient in our midst. 
Title: Re: Official Desensitization plan Begins!
Post by: B_Daniel on December 21, 2011, 12:38:25 AM
I echo everyone's excitement.  This is fantastic proof of desensitization's success!
Title: Re: Official Desensitization plan Begins!
Post by: B_Daniel on December 21, 2011, 12:45:49 AM
My primary doctor in San Francisco, who's a friend of the POIS community, gave me this smirk last time I was there and asked me if I've ever heard the argument against POIS being an allergy.  I said no.  So he said, when we O, the allergen exists our body.  Why would we become allergic to the allergen exiting?  He said ejaculation should in theory make us feel much better, not worse.  

I thought it was funny how cut and dry he looked at it like that.  I've been trained to think about POIS by now that there are so many different ways we could be allergic, that the simple thought of in our body and making contact, and out our body never really was a thought of mine.

All that being said, what more proof of an allergy could you want then Vandemolen feeling better from the desens treatment!
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on December 21, 2011, 05:58:48 AM
And of course Willem too has been a great example!

Not really sure where, technically, your docotor is coming from B_Daniel, what he was trying to say?
Whether it's in or out of the body, it doesn't cross the blood barrier. I think that's the whole issue with POIS.

In desens injections, it DOES cross the barrier. Don't know what happens with sub-lingual honestly, or why that seemingly works so well for us?

We have POIS (I think) because somehow, our semen crosses the blood-barrier when we orgasm.
Title: Re: Official Desensitization plan Begins!
Post by: Starsky on December 21, 2011, 11:37:52 AM
It works almost on the same way, under your skin and in your mouth you have toleragenic cells. It would not work if you inject it in your muscles. My allergist let me choose the way of desensitization and i chose SLIT becuase he thinks the results will be better and side effects smaller.
Title: Re: Official Desensitization plan Begins!
Post by: b_jim on December 21, 2011, 01:14:53 PM
If SLIT would work for Pois it could be a wonderful thing and a more easy cure.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on December 21, 2011, 05:27:36 PM
Waldinger used frozen and defrosted semen for the skin test. Could the use of a fresh sample instead affect the result in your opinion? I guess that in any case it wouldn't show a weaker reaction. (I don't have a freezer at present.)

Thanks,
Johan
Yes but he is not the one who does the injections. The doctor who does the injections said that there is a better result with fresh semen.
Title: Re: Official Desensitization plan Begins!
Post by: Habibou on December 21, 2011, 08:00:10 PM
Something strange that happened for me:
I made an intradermal injection test of my own semen, frozen sample at 1:1 = NO reaction
A doctor made an intradermal injection test of my own semen , fresh sample (15 minutes) at 1: 40 000 = HUGE reaction

The fact it is a frozen sample affected my results and I am currently on SLIT. I guess the desensitization by injections would be more efficient for me but no Doctor wants to take the risk in my country, so I do not really have any choice !
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on December 21, 2011, 08:55:03 PM
Here the plans :

(http://img190.imageshack.us/img190/8144/plandy.jpg)


I thought 1/20 was given after 2 years. And 1 year of maintenance dose: 1/20.

I had 1/5 and I will achieve within a year the current max 1/2. The new patients will reach this maybe in a few months. Because they want to do a more agressive scheme. And maybe in the future there will not be a dillution but a concentration. Like they do at wasp desensitization.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on December 21, 2011, 08:58:04 PM
Something strange that happened for me:
I made an intradermal injection test of my own semen, frozen sample at 1:1 = NO reaction
A doctor made an intradermal injection test of my own semen , fresh sample (15 minutes) at 1: 40 000 = HUGE reaction

The fact it is a frozen sample affected my results and I am currently on SLIT. I guess the desensitization by injections would be more efficient for me but no Doctor wants to take the risk in my country, so I do not really have any choice !
It is better that you see a red spot because then you know the dose is big enough. And that the body is fighting against it. Last time I had a minor reaction. And that's why this week the doctor gave me a less dilluted injection. At 1/5 I had a big red spot. But I am OK now. My arm doesn't hurt anymore like a few weeks ago.
Title: Re: Official Desensitization plan Begins!
Post by: b_jim on December 22, 2011, 02:15:17 AM
Something strange that happened for me:
I made an intradermal injection test of my own semen, frozen sample at 1:1 = NO reaction
A doctor made an intradermal injection test of my own semen , fresh sample (15 minutes) at 1: 40 000 = HUGE reaction



I'm not sure to understand.
Was the 1:40 000 frozen sample injected the same day ? Or during SLIT cure ?
1:40 000 is a very diluted dose and it may prove the reaction is very strong.

The fact the frozen 1:1 sample don't trigger the allergy is  a very interesting information ! It may help to identify the culprit in the semen, maybe a protein ?


Quote
The fact it is a frozen sample affected my results and I am currently on SLIT. I guess the desensitization by injections would be more efficient for me but no Doctor wants to take the risk in my country, so I do not really have any choice !

Is you lab near from Lyon ?
Title: Re: Official Desensitization plan Begins!
Post by: Starsky on December 22, 2011, 12:30:55 PM
Habibou, do you get a reaction when you put it under your tongue not diluted?
Title: Re: Official Desensitization plan Begins!
Post by: Jon on December 23, 2011, 10:28:42 PM
Hey guys, I have been so consumed with my symptoms that I am well behind when it comes to this desensitation stuff. I know nearly nothing.

Which of us POIS sufferes may this benefit? As we all know the cause of POIS varies greatly from person to person.
Title: Re: Official Desensitization plan Begins!
Post by: demografx on December 29, 2011, 03:08:21 AM

Jon,  I think we are at far too early a stage yet to make any concrete determinations about desensitization.

But so far, we have some encouragement and excitement!

Welcome to pioneering territory :)
Title: Re: Official Desensitization plan Begins!
Post by: Willem on December 29, 2011, 12:29:25 PM
Hey guys, I have been so consumed with my symptoms that I am well behind when it comes to this desensitation stuff. I know nearly nothing.

Which of us POIS sufferes may this benefit? As we all know the cause of POIS varies greatly from person to person.

Hi Jon, Demo is right that we're in pioneering territory and, as everyone knows, "the pioneers get the arrows". 

Anyway, just to quickly restate where we're at:

1) We're looking at two types, subcutaneous immunotherapy (offered by doctors, e.g. Vandemolen, CCConfucius) and sublingual immunotherapy (home therapy, tried by Rock27, Habibou, myself and others).
2) Both Vandemolen and I are reporting significant improvements after several months of treatment.
3) Prime candidates are those that strongly suspect allergies as the cause.  Smoking guns include: a) a positive response to anti-histamines, b) a topical allergic reaction to semen, either on the skin or in the mouth c) an allergic reaction to tests performed by allergists

Let us know if you have any other questions.
 
Title: Re: Official Desensitization plan Begins!
Post by: Habibou on December 30, 2011, 01:09:58 PM
Habibou, do you get a reaction when you put it under your tongue not diluted?


I never tried this for the moment :s I guess I should but I do not want it to affect my SLIT !

I'm not sure to understand.
Was the 1:40 000 frozen sample injected the same day ? Or during SLIT cure ?
1:40 000 is a very diluted dose and it may prove the reaction is very strong.

The fact the frozen 1:1 sample don't trigger the allergy is  a very interesting information ! It may help to identify the culprit in the semen, maybe a protein ?


Quote
The fact it is a frozen sample affected my results and I am currently on SLIT. I guess the desensitization by injections would be more efficient for me but no Doctor wants to take the risk in my country, so I do not really have any choice !

Is you lab near from Lyon ?
I live in Paris but I also go to Lyon, but no matter where, nobody wants to take any risk !

I tried the intradermal test at 1:1 with a frozen sample in may 2011.
Yes, 1:40 000 intradermal test were done the 30 th of august.
I started my SLIT the 2nd of November  :)
Title: Re: Official Desensitization plan Begins!
Post by: b_jim on December 31, 2011, 04:01:53 AM
Starsky started a topic about SLIT. You started in november so maybe you may have first improvements at the beginning of 2012 year. SLIT seems to be easy compared to injections therapy.

Yeah, nobody want to take any risk. In theory there is a few risk of anaphylactic shock. But probably for the strongest cases. I think the number of Pois days is a quite good indicator of Pois.

1-2 days : light cases
3-5 days : average
6 or > : heavy .
Title: Re: Official Desensitization plan Begins!
Post by: Willem on December 31, 2011, 12:24:49 PM
Yeah, nobody want to take any risk. In theory there is a few risk of anaphylactic shock. But probably for the strongest cases. I think the number of Pois days is a quite good indicator of Pois.

1-2 days : light cases
3-5 days : average
6 or > : heavy .

I think that's a very apt description.  I had a severe case (> 7 days) and most of my heavy reactions have been pois-like.  In one case though, I was in a hurry and blowing on the frozen semen trying to get it to thaw out faster.  I inhaled the air at close range and started having some shortness of breath and a bit of an anxiety attack (I never get either of those).  So be careful.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on January 02, 2012, 06:35:31 PM
I haven't taken this member up on the connection with the desens yet.

I'm still waiting for more affirmative results of desens. I am not really sure that it is a "cure" type solution, and while I am doing fantastic with niacin, I'm sticking with that until something a little more affirmative comes up.

I was surprised to find that it is available here, and following the results anxiously. It is good to have someone else locally with which to communicate.

The doctor here is following Dr. Waldinger's format very strictly, and if I have to be honest, I think our regime is advancing better. This doctor won't deviate from Dr. W.'s scheme.
I don't want to screw up Ali's topic. So I copied your reaction about desensitization.

Does the doctor in Chile knows about the new dillutions? In the paper the max was 1/20. Now the max is 1/2.
Title: Re: Official Desensitization plan Begins!
Post by: Hoping on February 11, 2012, 05:06:59 PM
I see it's been a couple months since anyone has posted on this topic. Are there any updates as far as desensitization goes? Is it proving successful??
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on February 11, 2012, 05:56:08 PM
I haven't taken this member up on the connection with the desens yet.

I'm still waiting for more affirmative results of desens. I am not really sure that it is a "cure" type solution, and while I am doing fantastic with niacin, I'm sticking with that until something a little more affirmative comes up.

I was surprised to find that it is available here, and following the results anxiously. It is good to have someone else locally with which to communicate.

The doctor here is following Dr. Waldinger's format very strictly, and if I have to be honest, I think our regime is advancing better. This doctor won't deviate from Dr. W.'s scheme.
I don't want to screw up Ali's topic. So I copied your reaction about desensitization.

Does the doctor in Chile knows about the new dillutions? In the paper the max was 1/20. Now the max is 1/2.

It's been mentioned that they're going stronger, but if there's nothing officially written, she doesn't want to go off of the plan.

Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on February 16, 2012, 07:15:22 PM
Today I had another injection. Last time I had 1/5. Normally today I would go to 1/4 or maybe 1/3. But because I was sick the last 4 weeks the doctor decided to give me a shot of 1/5. He said that it's normal that I get sick (not because of POIS, I didn't have an O.). He said that we have 2 immune systems and 1 was very challenged because of the intense injections.

They will have a new frequency of the shots. Normally it is once in 5 weeks. Now it will be once in 7 weeks. My doctor talked with a group of allergists and they said once in 7 weeks is the best. This group will do the injections too. And my doctor wants that everywhere in The Netherlands there will be the same method.
Title: Re: Official Desensitization plan Begins!
Post by: b_jim on February 20, 2012, 03:36:39 PM
The next thing I will try is petasites (butterbur). It's a plant with anti histamine effects.
Title: Re: Official Desensitization plan Begins!
Post by: Habibou on February 24, 2012, 10:49:32 AM
I am back at the turn of the tide. I come with good news.

Desensitization plan works for me. I have 40-50% less symptoms. I used to have 4 days of POIS. Now it is 2 days. And sometimes only 1 day. I began with a dillution of 1/10.000. Then 1/1000, 1/200, 1/70, 1/50, 1/30, 1/15. And today it was 1/5. The good news is that the max was 1/20. Now there was a meeting with allergists in The Netherlands. They said the dillution can be lower. Now the max is 1/2. Almost pure semen. When I went from 1/50 to 1/30 I had pain in my arms for 6 weeks. And I had a red mark on my arm and under my armpit. I thought it was blood-poisoning, because at another hospital an intern took some blood from my arm and she couldn't do it with 1 shot. But the doctor said this was just the reaction of the desensitization. Last time I had no reaction at all from the injection, no little red mark. So that's why today we went to 1/5. And today my arm really hurts again. :(

The other good news is that the Dutch health insurance are willing to pay for their clients. So that's why a few allergists are willing to do the desensitization. Next week there will be a test of 2 patients of 2 different allergists at the clinic where I go. So hopefully all the POIS-patients in The Netherlands can be helped in 2012 immediately!
Could it be possible to have a recap of your desensitization program with each date / mL injected/ concentration and time between each injections?
Thank you very much in advance  :) I started the injections and my doctor would like to get it !
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on February 24, 2012, 07:29:20 PM
Could it be possible to have a recap of your desensitization program with each date / mL injected/ concentration and time between each injections?
Thank you very much in advance  :) I started the injections and my doctor would like to get it !
I will ask the doctor when I go there the next time (april).
Good for you that you started with desens.
Title: Re: Official Desensitization plan Begins!
Post by: Habibou on March 05, 2012, 06:28:05 PM
Thank you very much :) Do you have any idea what was your starting dilution ?     1:40 000 or 1 : 10 000?
I practice the injections in the fat of the belly by the way...

For the moment, I did 2 injections 1:40 000 and 1:35 000 with 10 days between each one.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on March 05, 2012, 07:57:21 PM
Thank you very much :) Do you have any idea what was your starting dilution ?     1:40 000 or 1 : 10 000?
I practice the injections in the fat of the belly by the way...

For the moment, I did 2 injections 1:40 000 and 1:35 000 with 10 days between each one.
The first injection was 1/10.000. The injection go into my arm.
Title: Re: Official Desensitization plan Begins!
Post by: Habibou on March 07, 2012, 08:00:35 PM
Thank you ! My latest was 1: 20 000.. I preferred to start slowly... My spot was 2 cm with 1:40 000 at the intradermal own semen test. I guess your second injection was made 7 days later with 1: 5 000 Vandemolen?? :)
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on March 08, 2012, 07:05:35 AM
Thank you ! My latest was 1: 20 000.. I preferred to start slowly... My spot was 2 cm with 1:40 000 at the intradermal own semen test. I guess your second injection was made 7 days later with 1: 5 000 Vandemolen?? :)
I had injections once in 5 weeks. From now on once in 7 weeks. About the dillution: I can't remember, but if you read this whole topic you can find everything.
Title: Re: Official Desensitization plan Begins!
Post by: Habibou on March 08, 2012, 07:50:33 PM
Ok, I will ! Thank you very much  :)
Title: Re: Official Desensitization plan Begins!
Post by: Habibou on March 11, 2012, 11:04:04 AM
My doctor analyzed the program : 1/10 000 , 1/1 000 , 1/200 and the time between was too much careful ! He said I could do it easily with 1/10 000 , 1/5000 , 1/2000 with only 2 weeks between each...

What do you think about it?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on March 11, 2012, 06:49:50 PM
My doctor analyzed the program : 1/10 000 , 1/1 000 , 1/200 and the time between was too much careful ! He said I could do it easily with 1/10 000 , 1/5000 , 1/2000 with only 2 weeks between each...

What do you think about it?
Yes the second scheme is better. You can take big steps in the dillution scheme. When you reach a point that your immune system is chalenged to hard, then you should slow down and take a break. Untill then you can speed it up. But it's great that you are in the desens program too.
Title: Re: Official Desensitization plan Begins!
Post by: Habibou on March 13, 2012, 10:59:44 AM
Ok, thank you very much for your support Vandemolen !! I will do 1/10 000, 1/5000, 1:2000 ... with only 10 days between each injections and then see when I arrive at 500 how I feel  :)
Title: Re: Official Desensitization plan Begins!
Post by: Limejuice on March 13, 2012, 04:16:42 PM
Hi V, your dilution ratio is very high. Have you any progress in your pois symptoms? Thanks.
Title: Re: Official Desensitization plan Begins!
Post by: Starsky on March 13, 2012, 04:51:24 PM
Vandemolen, can you describe more clearly your improvement? Which symptoms for how long last, which symptoms disapeared completely...
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on March 13, 2012, 06:52:02 PM
Habibou, it takes a wile before you can notice the improvement. But because you get an injection every 10 days about 3 months you should feel the difference.

Limejuice and Starksky, yes there is a smaller dillution. I hope one day the semen will not be dilluted but concentrated. Then you can speed up the programm.
The big difference is the flu like symptoms. That was my major symptom before desens. Now I almost don't have that flu like symptoms. I have 1 day of light POIS. The same as it was before on day 3 or 4. And I am less tired. Sometimes I have even more energy on day 2. And I don't feel so down.

My major symptoms now are:
1. My Eustachian tube seems to be infected for a few weeks. But maybe this is not all POIS, because in a period I didn't have an O. but still have these problems with nose, throat and ears.
2. Acne
3. troubled bowels

And I also have UTI. Normally I could have an O. 1 day, next day not, next day O. and so on. But when I do this I get UTI. So I think it's better to give myself a rest of 2 or 3 days. Then the chance of UTI is smaller.
Title: Re: Official Desensitization plan Begins!
Post by: ve-to on March 15, 2012, 09:19:30 PM
Thanks for the report, here in Italy no doctor wants to take responsibility, I'd like to come to holland but it is a therapy too long unfortunately. If you can, you may ask the professor if he knows someone willing to be in Italy this therapy? Thank you.
Title: Re: Official Desensitization plan Begins!
Post by: Egordon on March 19, 2012, 08:40:32 PM
Good news guys! I found a sympathetic allergist in Northern California and am going in to begin testing and treatment in about 15 days. I have one question, though. Do you guys take anything to keep you from getting symptoms after O-ing in the doctor's office. I know for my test i've been told not to take any anti-histamines for 5 days prior and, if Dr. Waldinger is correct in theorizing that Niacin works because it depletes histamine stores, I imagine that I'm also not to take Niacin. Is this always going to be the case? Will I be allowed to take Niacin once I begin treatment? And, if not, what should I do so I don't get BAD POIS symptoms?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on March 20, 2012, 07:39:51 AM
Egordon, for the first skin pr.ick test you should not take anything. No anti-histamines and no Niacin. Anti-histamines could have a small effect on the red spot after the injection. The bigger the red mark, the more the doctor gets convinced that you have this allergy. I do the desens for almost a year. And after the first time I always used anti-histamines. And the last months I also use Niacin, but for me this doesn't help much. Great to hear that you can do the desens treatment. Good luck!
Title: Re: Official Desensitization plan Begins!
Post by: Observer on March 20, 2012, 08:22:22 AM
Good news guys! I found a sympathetic allergist in Northern California and am going in to begin testing and treatment in about 15 days. I have one question, though. Do you guys take anything to keep you from getting symptoms after O-ing in the doctor's office. I know for my test i've been told not to take any anti-histamines for 5 days prior and, if Dr. Waldinger is correct in theorizing that Niacin works because it depletes histamine stores, I imagine that I'm also not to take Niacin. Is this always going to be the case? Will I be allowed to take Niacin once I begin treatment? And, if not, what should I do so I don't get BAD POIS symptoms?

You can try what i have done before. While on POIS, wait for an empty stomach to repeat the niacin procedure and then have an Orgasm. That kicks off my brain fog. You could try and share with us!
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on April 02, 2012, 08:33:49 AM
Today I had an injection of 1/2. The max now is 1/1. I think next time I will get 1/1,75 or 1/1,5.

The first group of desens patients is NOW finished with the injections. Two of them are total POIS free.
Title: Re: Official Desensitization plan Begins!
Post by: Limejuice on April 02, 2012, 02:03:29 PM
Vandemolen, congrats!

Does the 1/2 injection mean one part semen too two parts water?

Two POIS patients are cured!  How many patients are in that first group?
Title: Re: Official Desensitization plan Begins!
Post by: Ccconfucius on April 02, 2012, 02:59:58 PM
Today I had an injection of 1/2. The max now is 1/1. I think next time I will get 1/1,75 or 1/1,5.

The first group of desens patients is not finished with the injections. Two of them are total POIS free.

why  can't those two come here and share their experience, dr waldinger already released his papers. it is been six months and am starting to loose hope.
And did those two change to fresh semen.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on April 02, 2012, 03:57:05 PM
Thanks Limejuice! In the first group there were 4 patients. Yes 2 parts dilution (water? Or something else) and 1 part semen.
And what I mean is that they are finished with the program!

CC: I don't know these patients. Maybe they never heard about this website. Never lose hope!
Title: Re: Official Desensitization plan Begins!
Post by: pois1 on April 06, 2012, 11:39:19 AM
Do we have a list of doctors who are performing desensitization therapy and accepting new patients?  From browsing the forum I see there's one in California and Chile.  Can someone please post this information and are there any other doctors?  I haven't had any luck finding someone who will perform SLIT.
Title: Re: Official Desensitization plan Begins!
Post by: LAPOISSE on April 07, 2012, 05:22:35 AM
Hi everybody, i'm a Newbi in here, but unfortunately, not in experiencing POIS. I believe a place like this can help all of us if we share informations...

Why don't we make a topic with every praticians/specialist aware of POIS in every countries ?

I'm in France and every doctor I explain my symptoms to explained me it was no relations between sexual activity and such symptoms...they really did't take it seriously

Title: Re: Official Desensitization plan Begins!
Post by: Daveman on April 07, 2012, 03:38:52 PM
LAPOISSE,

Yep, that's the story of our problem.

Think they know it all.....

We have a database that has tried to collect information of all the medical "collaborators".

http://www.poiscenter.com/db/collaborator_list.php

It's basic and getting people to put information into it hasn't been all that successful, but at least we have around a half a dozen names.

Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on April 30, 2012, 06:16:29 AM
I did an experiment again. I let my sperm for a few hours on my hand. I did this a year ago also. Then my hand was totally red with a lot of marks. Now no redness and no marks at all. My hand only feels a little bit iritated. So for me this is another proof that the injections are working for me.
Title: Re: Official Desensitization plan Begins!
Post by: Hoping on April 30, 2012, 10:02:24 AM
I did an experiment again. I let my sperm for a few hours on my hand. I did this a year ago also. Then my hand was totally red with a lot of marks. Now no redness and no marks at all. My hand only feels a little bit iritated. So for me this is another proof that the injections are working for me.

Awesome! You said you're finishing treatment soon, right? Please keep us all posted. I'm considering desensitization.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on April 30, 2012, 05:26:50 PM
No I am not finishing treatment. I almost reached the maximum of dillution. After that I will get a maintenance dose. Maybe for 2 years.
I will.
Title: Re: Official Desensitization plan Begins!
Post by: Ccconfucius on April 30, 2012, 06:43:38 PM
i got my doctor to go to 1:5, i snuck it in on him, when i he was doing dilution i asked to go higher.
I dont think am going higher than that though. 

good hearing that you are getting benefits.
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on May 01, 2012, 02:22:43 PM
How's your POIS these days Van?

What percentage reduction and how long does it last?

Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on May 01, 2012, 04:40:49 PM
Great CC, 1/5 is ok. Maybe your doctor will go further when he/she reached 1/5.

Daveman, without the UTI and the friction burn I think I have 60 to 70 % less POIS. Only the first hours of day 1. At the evening POIS is already almost gone.
Title: Re: Official Desensitization plan Begins!
Post by: Habibou on May 03, 2012, 04:18:44 PM
Great hearing that Van ! I started in February and I am now at 1:350. For the moment, I did not notice any improvement but I guess it is normal...
What was the concentration you started to feel the POIS began to decrease?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on May 03, 2012, 06:14:15 PM
That's great Habibou. I felt a little better after 1/200.
Title: Re: Official Desensitization plan Begins!
Post by: Ccconfucius on May 04, 2012, 07:55:25 PM
i got 1;10 shots multiple times at same ml before increasing  to 1;5, when i was getting those 1;10 shots my reaction to the shots never really went down Those shots have been in fridge for months. So i think when you get to higher concentration  and get enough shots you stop reacting to higher concentration you will start noticing differences.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on May 21, 2012, 05:09:56 PM
Today I had an injection of 1/1.

My only main problem now is the UTI. I will see my urologist this Wednesday. If he can't help me I will go to a special clinic of urology for a second opinion.

Now I can't really say how much percent my POIS is less because maybe some symptoms are because of the UTI.
Title: Re: Official Desensitization plan Begins!
Post by: Habibou on May 26, 2012, 06:36:57 PM
This is a great thing Van !
How much is reduced your brain fog especially?  :) which is more a POIS symptom...
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on May 29, 2012, 05:20:53 PM
I have less brain fog. At the end of day 1 it's completely dissapeared.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on June 15, 2012, 06:43:52 PM
For the first time I dared to have an O. on day 1 of POIS. Before if I did that I knew that I will get sick for 2 weeks. But now I am OK. In the morning I didn't fell 100 % but now at night I am OK. And tommorow on day 2 I should be fine.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on June 19, 2012, 06:48:13 PM
I had an O. 4 days in a row and I am doing just fine. And I feel the hapiness of a normale person the day after an O.

Maybe I could go on, but for now I will get a break. My p. is affected because of mast. too long without a lubricant.
Title: Re: Official Desensitization plan Begins!
Post by: Starsky on June 20, 2012, 04:15:16 AM
What are your POIS symptoms now? Are you almost 100% POISfree? Do you use Niacin?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on June 20, 2012, 06:43:06 AM
No I don't use Niacin. Niacin never helped me much.

I am still at 70 % POIS free. I have dry fingers, acne and the first hours a bit agitated and I feel a bit cold. But maybe I could be more POIS free if I mast. for a shorter time. My problem is when I had full POIS I used to mast. for 1 or 2 hours without an O. In that way I could have pleasure without having full POIS. So now when I wake up I feel cold. But even someone without POIS would have it could when mast. more than 1 hour. When I learn to mast. only 15 minutes I think my symptoms will be less.
Title: Re: Official Desensitization plan Begins!
Post by: vandam on June 20, 2012, 06:48:31 AM
I`m glad to hear that. I spoke with dr. Waldinger about the desensitization, but the list was too long for that he said.
But it`s at least a possible sollution in the future to get rid of my pois.

Title: Re: Official Desensitization plan Begins!
Post by: Hoping on June 20, 2012, 08:21:21 AM
No I don't use Niacin. Niacin never helped me much.

I am still at 70 % POIS free. I have dry fingers, acne and the first hours a bit agitated and I feel a bit cold. But maybe I could be more POIS free if I mast. for a shorter time. My problem is when I had full POIS I used to mast. for 1 or 2 hours without an O. In that way I could have pleasure without having full POIS. So now when I wake up I feel cold. But even someone without POIS would have it could when mast. more than 1 hour. When I learn to mast. only 15 minutes I think my symptoms will be less.
That's great Van! Remind me, are you done with treatment or are you still receiving injections?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on June 20, 2012, 09:07:27 PM
Vandam, yes there is a waiting list. But they are talking to other hospitals to do the desens. In that case they can help you also.

Hoping, yes I still get the injections. I think I will have them the next 1,5 year.
Title: Re: Official Desensitization plan Begins!
Post by: fidalgo on June 29, 2012, 06:44:57 PM
No I don't use Niacin. Niacin never helped me much.

I am still at 70 % POIS free. I have dry fingers, acne and the first hours a bit agitated and I feel a bit cold. But maybe I could be more POIS free if I mast. for a shorter time. My problem is when I had full POIS I used to mast. for 1 or 2 hours without an O. In that way I could have pleasure without having full POIS. So now when I wake up I feel cold. But even someone without POIS would have it could when mast. more than 1 hour. When I learn to mast. only 15 minutes I think my symptoms will be less.

Vandemolen, how was your symptoms before the dessensibilization? How many days it lasts?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on June 29, 2012, 06:49:41 PM
I had POIS for 4 days. The day after was very bad. When I had another O. in that 4 days my POIS was very bad. Then it could last for 2 weeks. And I had a lot of colds and sinusitis. Now I have 1 day of POIS, the same as day 4 before the desens. That means mild symptoms. My main problem now is problems with the prostate. I don't know it if has a connection with POIS. And acne after an O. I still have that.
Title: Re: Official Desensitization plan Begins!
Post by: fidalgo on June 29, 2012, 09:42:49 PM
What prostate problem?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on June 30, 2012, 06:00:04 AM
I have a lot of UTI:

http://poiscenter.com/forums/index.php?topic=143.0
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on June 30, 2012, 10:55:34 AM
My prostate always inflames with POIS, even when I take niacin.

I'm due for a prostate check anyways, but the inflammation is from the testicles down.

Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on June 30, 2012, 06:51:59 PM
Yes that's my problem too. And it's always the testicle on the right side which imflames. And the scrotum on the right side gets filled with moisture.
Title: Re: Official Desensitization plan Begins!
Post by: demografx on June 30, 2012, 08:45:48 PM
(http://i858.photobucket.com/albums/ab143/demografx/ee14a939.jpg)





Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: Official Desensitization plan Begins!
Post by: demografx on June 30, 2012, 08:47:29 PM


What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)


Title: Re: Official Desensitization plan Begins!
Post by: fidalgo on July 02, 2012, 04:19:00 PM
My prostate always inflames with POIS, even when I take niacin.

I'm due for a prostate check anyways, but the inflammation is from the testicles down.



How do you know that your prostate inflames?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on July 02, 2012, 05:41:45 PM
That's because the prostate swells. I can feel that it gets bigger.
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on July 02, 2012, 05:52:48 PM
My prostate always inflames with POIS, even when I take niacin.

I'm due for a prostate check anyways, but the inflammation is from the testicles down.



How do you know that your prostate inflames?

When you urinate the stream isn't as strong, takes longer to get it out. You may have to squeeze the last little bit out. Also it feels swollen, in a place near the base of the testicles toward the anus.

Title: Re: Official Desensitization plan Begins!
Post by: Starsky on July 03, 2012, 04:07:58 AM
Vandemolen what means the dilution 1:1? Pure semen? or for example in 1ml 0,5 of semen and 0,5 of saline?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on July 03, 2012, 05:48:44 AM
The last one. One part semen, one part saline.
Title: Re: Official Desensitization plan Begins!
Post by: fidalgo on July 05, 2012, 12:05:17 PM
My prostate always inflames with POIS, even when I take niacin.

I'm due for a prostate check anyways, but the inflammation is from the testicles down.



How do you know that your prostate inflames?

When you urinate the stream isn't as strong, takes longer to get it out. You may have to squeeze the last little bit out. Also it feels swollen, in a place near the base of the testicles toward the anus.



I have all of this symptoms. I never thought that this is because of my prostate...
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on July 09, 2012, 08:20:32 AM
Today I had an injection of 2/1. Two parts of semen.
Title: Re: Official Desensitization plan Begins!
Post by: Limejuice on July 14, 2012, 06:31:49 PM
Hey Vandemolen,

Just curious about your desensatization progress with pois symptoms. How do you feel after O?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on July 15, 2012, 05:45:40 AM
Limejuice,
I am ok. I still have 70 % less symptoms. The next day I have a half a day of POIS. After dinner I hardly feel the POIS-symptoms. I will abstain for a few weeks to give my prostate the time to heal. And then I will masturb. only a short time. Because now I do that for more then 1 hour. And then you don't know if the back pain is because of POIS or because sitting in the same position for more then 1 hour.
Title: Re: Official Desensitization plan Begins!
Post by: Limejuice on July 15, 2012, 10:32:10 PM
Thanks and glad to hear it!
Title: Re: Official Desensitization plan Begins!
Post by: Dante88 on July 29, 2012, 12:17:40 PM
Limejuice,
I am ok. I still have 70 % less symptoms. The next day I have a half a day of POIS. After dinner I hardly feel the POIS-symptoms. I will abstain for a few weeks to give my prostate the time to heal. And then I will masturb. only a short time. Because now I do that for more then 1 hour. And then you don't know if the back pain is because of POIS or because sitting in the same position for more then 1 hour.

Vandemolen,

I'm glad to hear that you are having success. So you are using "fresh" semen, provided a few hours before the injection, correct? This seems counter-intuitive, since it is equivalent to eating a whole carton of peanut butter (if you are allergic to it) and then have a peanut butter hyposensitzation shot...it kind of defeats the purpose since you are already in a full blown allergic reaction when you get the injection.

Can you give a short summary of your begin treatment date, injection dosage and any commments?

Thanks!
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on July 30, 2012, 07:35:48 AM
Thanks Limejuice and Dante88.

Dante, they also give injections to people who have hay fever at that moment. There is difference between a normal allergy and an injection. An injection goes straight in your body.

All my treatment details are posted here, with the dosage and all. Just read the whole topic. And if you still have questions I will be happy to answer them.
Title: Re: Official Desensitization plan Begins!
Post by: Egordon on July 30, 2012, 11:30:16 PM
Hey seasoned desens patients,

I need some advice. So, I've been getting desens for about 3 or 4 months now but my arm has never reacted post-shot, and i'm beginning to worry that my symptoms won't improve as a result. When I got my allergy test (as i've posted elsewhere), my arm reacted mildly but not until we went ALL THE WAY up to 1:300. But now i'm at 1:100 in my injections and haven't seen so much as a red spot.

I suspect that the original sample that I gave the doctor simply wasn't very potent to start with and has gotten worse as time's progressed. I'm not sure why though. All that I can think of is: 1) it was in a slightly warm car for about an hr as i drove it to the doctor; 2) I O'd at least once the night before, so it may have had less sperm or something. (Because I only O 2 or 3 days a week, I usually try to go at least 2-3 times each day.)

In any case, those of you that have seen improvement because of desens, under what circumstances did you get your sample? Was it completely frozen when you turned it in? Do you give a new one each week? Do you usually abstain before handing it in?

I just want desens to work and have no clue what i'm doing wrong.
Title: Re: Official Desensitization plan Begins!
Post by: fidalgo on July 31, 2012, 07:25:02 AM
Hey seasoned desens patients,

I need some advice. So, I've been getting desens for about 3 or 4 months now but my arm has never reacted post-shot, and i'm beginning to worry that my symptoms won't improve as a result. When I got my allergy test (as i've posted elsewhere), my arm reacted mildly but not until we went ALL THE WAY up to 1:300. But now i'm at 1:100 in my injections and haven't seen so much as a red spot.

I suspect that the original sample that I gave the doctor simply wasn't very potent to start with and has gotten worse as time's progressed. I'm not sure why though. All that I can think of is: 1) it was in a slightly warm car for about an hr as i drove it to the doctor; 2) I O'd at least once the night before, so it may have had less sperm or something. (Because I only O 2 or 3 days a week, I usually try to go at least 2-3 times each day.)

In any case, those of you that have seen improvement because of desens, under what circumstances did you get your sample? Was it completely frozen when you turned it in? Do you give a new one each week? Do you usually abstain before handing it in?

I just want desens to work and have no clue what i'm doing wrong.

Egordon, as I understand dessensibilization that is a not problem in you procedure. You have allergy only at 1: 300, so, if you start tha dessensibilization with much more dillution, 1: 100.000, for example, you shouldn't have a reaction. The reason that you are in 1:100 and don't have a reaction is because your dessensibilization is working.

But this is the theory. Van, as I understand, is doing the dessinbilizations with fresh semen. He said that fresh semen works better. I think you, to be sure, must change the sample and give a fresh one to your doctor.
Title: Re: Official Desensitization plan Begins!
Post by: Egordon on July 31, 2012, 10:27:56 AM
Hi fidalgo,

I'm sorry if the post was unclear. Although my allergy test indicated that I am allergic at 1:300, my desens started at 1:10,000. That dilution may seem a very low starting point, but Waldinger apparently now starts his patients at 1:3,000, so it's actually not that bad.

Your theory that i'm not reacting because the treatment is working seems somewhat plausible but is completely out of line with what all the other posters have experienced. Many of them were hardcore in POIS even at 1:40,000 (I felt nothing), and have reacted in a serious way at each "step." My complete lack of a reaction thereby indicates that there may be something wrong with my doctor's methodology.
Title: Re: Official Desensitization plan Begins!
Post by: Ccconfucius on July 31, 2012, 11:39:06 AM
I started ant 1;40000, but didnt react to 1;4000. and at high concetrations like 1;5 have very small reactions at every shot.

if you are not reacting at super high concentrations then there is something wrong
Title: Re: Official Desensitization plan Begins!
Post by: fidalgo on July 31, 2012, 01:48:35 PM
I started ant 1;40000, but didnt react to 1;4000. and at high concetrations like 1;5 have very small reactions at every shot.

if you are not reacting at super high concentrations then there is something wrong


How is your improvement? Compair before the dessenbilization and now...
Title: Re: Official Desensitization plan Begins!
Post by: Egordon on August 01, 2012, 01:45:49 PM
Van,

When you say that you use fresh semen, do you mean produced in the doctor's office (or immediately before going)? Or do you produce it the night before? Do you typically freeze or refrigerate it before taking it to the doctor?

Please help me figure out the flaws to our methodology! I'd really like to get positive results from my treatments....
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on August 04, 2012, 10:12:03 AM
No I produce it at home. The injection is given 1,5 or 2 hours after. But in The Netherlands it's not that warm. If you live in a warm country maybe it's different.
Title: Re: Official Desensitization plan Begins!
Post by: Dante88 on August 04, 2012, 03:31:10 PM
I have noticed that I have very "foamy" urine after ejaculation. It is a different type of foam than I usually have when urinating...if I leave it in the toilet without flushing it will stay foamy and won't go away...I believe that retrograde ejaculation is the culprit. This would explain what is causing the allergic reaction.

I went to see my allergist yesterday and had a skin ***** test performed. I had a positive reaction to my own semen and the doctor has decided to put me on a strong antihistamine (Zaditen SRO). The doctor is still waiting on the results of my blood test to determine whether or not to perform hypo sensitization therapy.

I have noticed that my symptoms seem to be magnified if I masturbate to pornography as opposed to having sex with my girlfriend or masturbating w/o pornography. I believe that this is due to the increased dopamine consumption correlated with pornography.

To summarize my theory...the allergic reaction interferes with the functioning of the pituitary/hypothalamus..decreasing the amount of dopamine the body is able to produce and release. Pornography uses up the dopamine and POIS makes the body unable to replenish dopamine levels.

I have had other allergic reactions in the past...namely a reaction to the iodine found in some shellfish. The reaction that I had was very similar to what I experience with POIS...reaffirming that for me, POIS is an allergic reaction.

Taking  an antihistamine like zyrtec seems to abate the symptoms somewhat. Also I have been taking Niacinimide recently at roughly 2500 mg. It does seem to help with the symptoms as well...but it doesnt not cure them.
Title: Re: Official Desensitization plan Begins!
Post by: demografx on August 05, 2012, 02:13:53 AM

Tell your doctor to do the desens[itization]!


Vandemolen: Please do not make medical recommendations to other members.

Thank you.

Demo
Title: Re: Official Desensitization plan Begins!
Post by: demografx on August 05, 2012, 02:21:50 AM
   (http://www.poiscenter.com/newsletters/NL-6.jpg)
 (http://i858.photobucket.com/albums/ab143/demografx/d7d7d72f.jpg)                        (http://i858.photobucket.com/albums/ab143/demografx/0d0e0e35.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
 
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on August 29, 2012, 12:21:56 PM
Today I had injetion of 3/1 (75% semen). Last time I had 2/1 (66% semen). The max is 9/1 (90% semen). It's getting better.
Title: Re: Official Desensitization plan Begins!
Post by: demografx on August 29, 2012, 07:50:49 PM

(http://www.wagingpeace.org/images/support/donation_image_main.jpg)

$9,270.00 $9,350.00 $10,272.00 $11,002.00 raised    
THANK YOU TO THE RETURNING MONTHLY DONOR TODAY!!!!
towards our $33,500 goal.

(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)





Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)








Title: Re: Official Desensitization plan Begins!
Post by: Stef on August 29, 2012, 10:17:46 PM
Demografx,

Your forum has THREE monthly donors thus far -- and ONE quarterly donor!!

Stef
Title: Re: Official Desensitization plan Begins!
Post by: demografx on August 29, 2012, 11:21:43 PM



Dear Stef,


That is Wonderful news!

I don't believe in miracles but this is pretty damn close!

 :)


Title: Re: Official Desensitization plan Begins!
Post by: Hoping on August 31, 2012, 10:50:34 AM
Today I had injetion of 3/1 (75% semen). Last time I had 2/1 (66% semen). The max is 9/1 (90% semen). It's getting better.

That's great Van! Keep us updated. It sounds like it's been helping with your symptoms?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on September 26, 2012, 07:11:47 PM
Thanks Hoping! Yes without the prostate problem my POIS is reduced with 80 %. This 20 % is only half a day. I had O.'s in days in a row, and I was still OK.
Title: Re: Official Desensitization plan Begins!
Post by: LAPOISSE on September 27, 2012, 09:39:10 AM
hum...Very interesting...Is the other person of the program have the same result.

This would confirm the allergic theory...

Could Pois be an allergic reaction causing an hormal related desorder ? Is there connection possible ?
Title: Re: Official Desensitization plan Begins!
Post by: Egordon on September 29, 2012, 02:47:11 AM
Yeah, I too have been getting desens and am pretty far along in my treatment -- I should be at 1:10 in about 2 weeks. My body doesn't seem to have responded especially well to the process; unlike many of the other desens patients, I really only reacted to the shots upon first beginning them (at 1:1500, i believe), and even then the reactions were pretty mild (I never underwent full-blown POIS as a result of my shots). Despite this, though, i've seen a marked change in my POIS. While I still get symptoms post-O, they're reduced by upwards of 50% (and maybe as much as 60-65%) and are far far more bearable. In fact, the treatment has made O-ing without niacin completely tolerable -- although it's something I still try hard to avoid. As for the duration of my symptoms, i'm not sure whether or not it's been reduced, as I only O twice a week and use Celebrex immediately afterwards to eliminate any remaining symptoms. But I can say for sure that desens IS working.   
Title: Re: Official Desensitization plan Begins!
Post by: Jimmy on October 12, 2012, 03:40:23 PM
Hi Vandemolen,
Any news regarding your progress?
Title: Re: Official Desensitization plan Begins!
Post by: demografx on October 12, 2012, 11:12:01 PM
Jimmy: WELCOME ABOARD!!

Please check our comprehensive list of POIS resources for you, right here:

http://poiscenter.com/forums/index.php?topic=1.msg1#msg1

Best wishes!

Demo and Daveman
Title: Re: Official Desensitization plan Begins!
Post by: Jimmy on October 13, 2012, 03:13:12 PM
Thanks Guys,

I'm new to the forum. I suffer from POIS since long time. I made blood tests and all was normal and even for the sperm antibodies test was negative. it seems that there are no antibodies against sperms in my blood. have you made the sperm antibodies test? and does this test confirm that some one is allergic to his semen?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on October 16, 2012, 06:09:27 PM
Jimmy after every time I have an injection I report here. So look at this topic for all the details. I have an appointment next week and I will report then.
Title: Re: Official Desensitization plan Begins!
Post by: demografx on October 16, 2012, 07:17:36 PM
Thanks Guys,

I'm new to the forum. I suffer from POIS since long time. I made blood tests and all was normal and even for the sperm antibodies test was negative. it seems that there are no antibodies against sperms in my blood. have you made the sperm antibodies test? and does this test confirm that some one is allergic to his semen?

Jimmy, welcome again. Please read carefully throughout the forum about de-sensitization.

There is good and bad.
Title: Re: Official Desensitization plan Begins!
Post by: fidalgo on October 20, 2012, 03:56:57 AM
Thanks Hoping! Yes without the prostate problem my POIS is reduced with 80 %. This 20 % is only half a day. I had O.'s in days in a row, and I was still OK.

Vandemolen, do you have talk wih Dr. Waldingter about your prostate problems?
Title: Re: Official Desensitization plan Begins!
Post by: Egordon on October 21, 2012, 07:16:37 PM
Jimmy,

At what dilutions did your doctor test you? As one of this board's many posters whose body doesn't locally react to injections, I'd strongly recommend requesting to get tests done at close to full concentrate. I didn't react until we got to something like 1:10 or 1:5. And I still don't react to my weekly allergy shots.
Title: Re: Official Desensitization plan Begins!
Post by: demografx on October 21, 2012, 07:44:02 PM
(http://www.poiscenter.com/newsletters/NL-6.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: Official Desensitization plan Begins!
Post by: Jimmy on October 22, 2012, 04:33:32 PM
Egordon,

As you know this a rare syndroum and doctors dont know about it. I've tried explaining to my doctor the situation and the theories behind it. But he only requested a blood test (named anti sperm antibodies test) without any sperm dilution. he said that they can check for antisperm antiobodies in the blood without injecttions.

I'm wondering if he went the correct way and if that test mean anything to the POIS allergy.

Thanks,
Jimmy
Title: Re: Official Desensitization plan Begins!
Post by: Ccconfucius on October 22, 2012, 05:17:07 PM
Egordon,

As you know this a rare syndroum and doctors dont know about it. I've tried explaining to my doctor the situation and the theories behind it. But he only requested a blood test (named anti sperm antibodies test) without any sperm dilution. he said that they can check for antisperm antiobodies in the blood without injecttions.

I'm wondering if he went the correct way and if that test mean anything to the POIS allergy.

Thanks,
Jimmy

The problem with just anti sperm antibodies is it focus just on sperm. Semen contains many substances and we can be reacting to anyone of those substances.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on October 22, 2012, 05:44:57 PM
Vandemolen, do you have talk wih Dr. Waldingter about your prostate problems?
No I didn't. But I talked with the doctor who does the injections. He said that the treatment at my urologist doesn't help I must ask for a second opinion.
Title: Re: Official Desensitization plan Begins!
Post by: jotape_chile on October 23, 2012, 11:04:34 AM
Hi everyone.

For me this is the most interesting topic on the forum.
I'm the guy doing desensitization in Chile and my prgression has been as follows:

(Using frozen semen)

June 2011 - Prick test: positive reaction to my own semen
July 2011 - 1/ 20.000 concentration injection (no POIS)
September 2011 - 1/10000 concentration injection (POIS after injection)
January 2012 - 1/5000 (after this I suspended my treatment... could not stand feeling POIS after every session)
June - 1/5000 - Resume treatment (Feeling POIS after every injection since)

I have asked my doctor to give me the most recent concentrations. As soon as I got them, I will post here)

My symptoms have not been reduced. My POIS is rather short (2 days), but extremely umpleasent and depressing.
Any questions welcome.

Juan Pablo

JP


Title: Re: Official Desensitization plan Begins!
Post by: Daveman on October 23, 2012, 12:40:09 PM
Hi JP,

Those that say that desens. seems to be working need at least a year to get perceptible results. Even so, the improvement probably won't reach more than 50% to 60% in less than a couple of years.

So one has to be patient.

The results of desens. seem to be a judgement call, and a much more difficult call than say, results seen with niacin, in the sense that desens results are day by day, like watching someone grow up. You don't see the changes as easily. Unless you are a long lost uncle that comes back after 10 years and sees the big difference all at once.

With niacin you try it and feel the whole improvement all at once. The only way to do that with desens is go into coma for a year and do the treatments meantime. When you wake up in a year, you should feel the difference.

Perhaps another thing that complicates the evaluation of desens. is the fact that you are sick almost constantly while you take the injections. So how can you evaluate the benefit if you are in POIS from desens.? You would have to stop injections for a while, in which case you are going to start to feel better. ( like when you stop banging your head on the wall it feels better.) So your "relative view" of symptomology is pre-load.

I'm not saying it doesn't work. Just that it's very difficult to make an objective evaluation. There is also a huge desire that it will work complicating the judgement even more.

I think you've had trouble making the niacin and vitamin supplementation work. Niacin is difficult to take "correctly",and if it isn't taken "correctly" ("correctly" may be one way for some and another way for others), niacinamide is much less complicated. It can be take daily, and even IF it doesn't reduce symptoms, there is a growing consensus that it is still protecting your system from further continuous damage from POIS.

Niacinamide can also be taken WHILE doing the desens program! So they are not mutually exclusive.

See threads on niacinamide..... (search niacinamide on this forum).






Title: Re: Official Desensitization plan Begins!
Post by: jotape_chile on October 23, 2012, 02:21:56 PM
Dear Dave,

As we spoke, Niacin did not work for me. I am now trying the "Kurtosis" method and hoping it will work in the future.
My main concern is with the desensitization: I hate "knowing" I will feel awful after each shot. It kills my morale.
If I could only get some relief during the treatment it would be a great step forward.

I will try to find niacimide thru Ebay and give it a try taking it every day.

Best regards,

Juan Pablo

JP
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on October 23, 2012, 02:47:03 PM
I hope daily niacinamide helps to relieve symptoms, read the information of course, it would be useful to take the l-methionine once or twice a week to help the liver process the niacinamide. BUT the important part is that the niacinamide, even though it MAY not relieve symptoms is still helping you protect your system, perhaps even give your system a chance to play catch up and get to where you are within range to be symptomatically  benefited by the treatment.

Unfortunately we have POIS, and so far there is no guarantee that we can prevent the symptoms in all.

You are our ideal candidate. If we can fix you we can fix everybody!! ;D But really, you are not alone. We need to concentrate on those of you for which nothing has worked to date. We will find the answer there.





Title: Re: Official Desensitization plan Begins!
Post by: Egordon on October 24, 2012, 12:48:19 AM
Jimmy,

Here's what I did to get my doctors to fully investigate the disease and begin treating me. You want the allergy test, so if it doesn't work on the doctor you're seeing, get a referral to someone else.

Print out copies of the following:  each of Waldinger's papers and any of the other major peer-reviewed POIS papers, as well as two, relatively brief newspaper articles colloquially describing the disease (I used the La times and Reuters -- use whatever paper is reputable where you live). Take these materials to your doctor and show him the newspaper articles first. Then give him the papers and let him know what they're about (the autoimmune theory and the desensitization process). After that, describe your symptoms.

Doing this is a major help, as it lends credibility to a disease a lot of medical practitioners are skeptical of.
Title: Re: Official Desensitization plan Begins!
Post by: Egordon on October 24, 2012, 12:54:41 AM
Juan Pablo,

Have you tried using non-steroidal antiinflammatories? I've been getting the desens for a few months and have used them after just about every shot. They eliminate your symptoms within the hour! I take Celebrex because I have asthma, but I used to take indomethacin and it worked well too.

(It's crazy to me that NSAIDs aren't brought up more often on this board. I'll never understand why our posters are so enthusiastic about the litanies of holistic and untested remedies, and so reluctant to try things developed by medical science and proven to reduce inflammation. Alternative explanations are exciting, no doubt, but these drugs just plain work for people with our condition.)
Title: Re: Official Desensitization plan Begins!
Post by: Snowblind on October 24, 2012, 09:24:00 AM
I have tried NSAIDs after O and they work rather well but i do not wish to take them to often because they keep me from gaining muscles at the gym :P. I am going to try Cissus for the inflammation caused by O:s and see if it works. Has anyone else tried Cissus?

Egordon: are u shore that the NSAIDs does not interact with the desensitisation process? What if it takes away whatever the body is going to get used to?

I am wondering if a vasectomy would be effective in treating POIS? Does anyone else have thoughts on this? I am thinking if the sperm is what we are allergic to wouldn't that help? I realise that maby not everyone wants to do that but people who already have children and do not wish to get more might consider it if it would work. Or is it the other fluid that comes out (do not know what it is called in english) that most of us get the inflammatory reaction from?

Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on October 24, 2012, 06:22:06 PM
Great that Niacin helps some of us. But for me Niacin helps me ZERO.
Because of the desens I have 70 % less symptoms. Offcourse I want to be 100 % cured. But if I have to choose between ZERO relief or 70 % less symptoms the choice is easy.
Title: Re: Official Desensitization plan Begins!
Post by: jotape_chile on October 25, 2012, 07:40:25 AM
Dear Vande,

What I'm worried the most is the fact that I KNOW I will be on POIS after every shot.
I desperately need something that reduces my symptoms that day and the day after. That way my life quality would improve a lot.

What do you friends recommend? Until now nothing has worked for me (ej: niacin)

Juan Pablo
JP
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on October 25, 2012, 11:39:12 AM
JP,

I know this doesn't help, but niacin worked once for you quite well. Very strange! Maybe someone can figure that one out..(Kurtosis?).

I've worked with JP to try to get niacin to work again but no luck, we have tried a lot of things, even changing brands etc.

JP has a short (2 days) but quite intense POIS. Mostly cognitive right JP?

As I say, there must be a special key to POIS hidden away in JP and others like him, that if we can unlock, maybe we solve something big for everybody!!

Title: Re: Official Desensitization plan Begins!
Post by: jotape_chile on October 25, 2012, 11:52:19 AM
Daveman,

My POIS is mainly physical: chills, itching, fatigue, stomachache, rashes, dry skin.
It lasts the rest of the day after an O + the next day.

I'm really getting desperate with this. I need a solution at least for the symptoms, so I can continue my treatment.
I'm kind of loosing my faith already... sorry.

Juan Pablo
JP
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on October 25, 2012, 05:47:42 PM
JP, today I talked with my doctor about your desens scheme. He said it is normal that you have that symptoms after every shot. There is a gap of a few months after every injection. And you are going very fast. So your body gets a blow after every injection. If you slow down and take a shot after 6 weeks your body can take it. Then you will get less symptoms. The first scheme of dr. Waldinger is published. So your doctor has to read that first. The only thing that changed now is that the max dillution is 10/1. Today I had 8/1.
Title: Re: Official Desensitization plan Begins!
Post by: jotape_chile on November 06, 2012, 12:05:55 PM
Dear Vande,

the gaps between the shots are filled with shots with the same concentration.
I have not had a shot during the last month, because I had to cancel my appointment.

Fortunately, using the original "Kurtosis method" I have had a relief after a night of O's. I estimate the rlief in 50%, and I'm hoping is no one hit wonder (as Niacin was).
I am yet to get the details from my doctor on the details of my desenz process, but I will post them as soon I have them.

Best regards my friends,

JP

Title: Re: Official Desensitization plan Begins!
Post by: Daveman on November 06, 2012, 01:39:35 PM
Dear Vande,

the gaps between the shots are filled with shots with the same concentration.
I have not had a shot during the last month, because I had to cancel my appointment.

Fortunately, using the original "Kurtosis method" I have had a relief after a night of O's. I estimate the rlief in 50%, and I'm hoping is no one hit wonder (as Niacin was).
I am yet to get the details from my doctor on the details of my desenz process, but I will post them as soon I have them.

Best regards my friends,

JP



WOW, I am so happy for you. Let's hope that your relief is more steady.
Even with the great benefit that niacin gives me I can't do a whole night of orgasms, or even more than one!!

So 50% with several in a night is fantastic!!

Good luck! And WOW.

Title: Re: Official Desensitization plan Begins!
Post by: demografx on November 06, 2012, 06:01:23 PM
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: Official Desensitization plan Begins!
Post by: jotape_chile on November 08, 2012, 08:15:39 AM
Dear Daveman & Vande,

Today, again, I'm on this strange lowered POIS.
This week I've had three O's and the feeling has been quite different since following the Kurtosis method.
Even my mood is better... for example: yesterday I had sex with my current partner and then I went to a small party  :-\
This would have been impossible before. I even had a good time.

Today I'm kind of exhausted, but not feeling bad. Only tired... this week has been very intensive in sex.

I'm very enthusiastic after this week... hope things continue improving. I'm on a normal 50% symptoms, feeling some heat waves and tiredness, but nothing compard to other POIS days before undergoing Kurtosis.

I will keep you updated. I hope that this improves during my desenz treatment.

Bes regards,

JP

Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on November 08, 2012, 07:20:11 PM
That's great JP! I hope that from now on things only get better for you. Good luck!
Title: Re: Official Desensitization plan Begins!
Post by: Hoping on November 08, 2012, 09:46:41 PM
Dear Daveman & Vande,

Today, again, I'm on this strange lowered POIS.
This week I've had three O's and the feeling has been quite different since following the Kurtosis method.
Even my mood is better... for example: yesterday I had sex with my current partner and then I went to a small party  :-\
This would have been impossible before. I even had a good time.

Today I'm kind of exhausted, but not feeling bad. Only tired... this week has been very intensive in sex.

I'm very enthusiastic after this week... hope things continue improving. I'm on a normal 50% symptoms, feeling some heat waves and tiredness, but nothing compard to other POIS days before undergoing Kurtosis.

I will keep you updated. I hope that this improves during my desenz treatment.

Bes regards,

JP

That's great JP! Hearing stories like this really give us a lot of hope. Keep reporting back.
Title: Re: Official Desensitization plan Begins!
Post by: jotape_chile on November 15, 2012, 09:18:00 AM
JOTAPE_CHILE          
Desenzitization treatment evolution         
         
DATE         CONCENTRATION   EFFECT   
         
29-06-2011              Prick test +   
13-07-2011   1/40,000   No POIS   
27-07-2011   1/40,000   No POIS   
17-08-2011   1/20,000   No POIS   
07-09-2011   1/20,000   No POIS   
24-09-2011   1/10,000   POIS   
05-10-2011   1/10,000   POIS   
19-10-2011   1/10,000   POIS   
02-11-2011   1/10,000   POIS   
23-11-2011   1/10,000   POIS   
14-12-2011   1/10,000   POIS   
11-01-2012   1/5,000   POIS   
SUSPENDED         
11-06-2012   1/5,000   POIS   
25-06-2012   1/2,500   POIS   
03-07-2012   1/1,250   POIS   
23-07-2012   1/625   POIS   
23-08-2012   1/315   POIS   (Niacin)
03-09-2012   1/105   POIS   (Niacin)
01-10-2012   1/50           POIS   (Niacin)
14-11-2012   1/25           POIS - Massive fatigue   (Kurtosis)

Please comment.

JP

Title: Re: Official Desensitization plan Begins!
Post by: Daveman on November 15, 2012, 11:44:54 AM
Thanks for the numbers JP. Sounds pretty exhausting.

How are you doing in between sessions?

Sounds like the Kurtosis regime started to produce fatigue? As I understand this can be an initial consequence as the system readjusts.
 Is it still helping the POIS any?

Do you take methionine to help counteract the B-Complex load etc.?

Your concentrations are getting pretty strong. Do you think that if you backed down to like 1/5000 you would still get POIS. Not that I'm suggesting it, but one might assume that if you are existing at 1/25, the 1/5000 would be a piece of cake now.

Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on November 15, 2012, 06:22:39 PM
JP, I see that you still have problems with the injections. My advice (I am no doctor!) is to ask your doctor to slow down the desens. I used to have 1 injection in 5 weeks. Now the dillution is low, I have an injection once in 7 weeks. So maybe try to have an injection once a month. And not twice a month.

Now you are at 1/25 you should feel better. I hope you do.
Title: Re: Official Desensitization plan Begins!
Post by: kurtosis on November 16, 2012, 05:34:34 AM
Thanks for the numbers JP. Sounds pretty exhausting.

How are you doing in between sessions?

Sounds like the Kurtosis regime started to produce fatigue? As I understand this can be an initial consequence as the system readjusts.
 Is it still helping the POIS any?


I don't know if that's what he's saying. Perhaps the desens is producing fatigue?
Either way, let's let JP give us some more detail :)
Title: Re: Official Desensitization plan Begins!
Post by: demografx on November 16, 2012, 06:02:13 AM

Let's let JP give us some more detail :)


Yes. I agree.
Title: Re: Official Desensitization plan Begins!
Post by: jotape_chile on November 16, 2012, 08:41:19 AM
Hi everyone...
Now recovered from my two-day POIS symptoms.

Let me answer to your questions:

Daveman: Between sessions I do OK. I only get the POIS the same day and the day after (as if I have had an O). Undergoing the Kurtosis method I've been able to reduce POIS symptoms, but at the same time I get a massive physical fatigue after an O or desenz injection. I am not taking methionine at the moment. Reducing the concentration and getting no symptoms sounds logical, but at the moment I prefer to continue going up until a 1/1 concentration.

Vande: I'm having a shot every 4-5 weeks. Next is on December 12th. To be honest, besides the positive effects of going with the Kurtosis method, I still get the POIS after and O or injection. Hopefully when I get to 1/1 I will start feeling better.

Kurtosis: After following your proposed diet I've been feeling better after an O. My symptoms are reduced in intensity, but I get very tired. Some of the symptoms have disappeared, but still I cannot be 100% fit because I feel a massive fatigue. Anyways, the method has done me good and I think it will continue improving.


Friends, thanks a lot for your support. I will be posting new developments on my treatment, and if anything improves I will surely be posting it here.
Let's keep in touch, and if you got any questions, feel free to post'em here. I check this thread daily.

Best regards,

JP

Title: Re: Official Desensitization plan Begins!
Post by: Egordon on November 17, 2012, 03:01:48 AM
JP,

You're going super fast! And I don't mean that with regard to the # of weeks in between injections -- you're going up in dilutions about 3 times faster than I did. (And I get shots 2 or 3 times a week.) I'm sure your doctor's chosen this regimen because he feels your body can handle it, but you might feel a bit better if your steps were a bit smaller. Are you reacting abnormally  (either at the site of your injection or symptomatically) after your shots? This would indicate that your moving a bit too fast.

Also, did you ever try NSAIDs?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on November 17, 2012, 07:08:56 PM
JP, I think Erdogan gave you a good advice. Slow down. Go in smaller steps. When I had pain in my arm because of the injection for more then 2 weeks my doctor slowed down the dillution. And when you are feeling ok, you can take bigger steps in the dillution. So ask your doctor if he can slow down.
Title: Re: Official Desensitization plan Begins!
Post by: demografx on November 19, 2012, 03:37:47 PM

(http://www.poiscenter.com/newsletters/NL-6.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E
 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: Official Desensitization plan Begins!
Post by: demografx on November 20, 2012, 12:26:41 AM
If $50 to $100 or more seems like too much money to give for now, how about committing $5, $10, $20 or more per MONTH?

Select as many months as you want! 2 months, 3 months, 4 months, 6 months, 12 months, whatever!  :)

(http://www.mitcheljonmusic.com/uploads/make_recurring_donation.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Simply click above and scroll down till you see, "Make this a recurring donation"...

THANK YOU, EVERYONE - YOUR AUTOMATIC MONTHLY DONATIONS WILL HASTEN OUR "FINAL HOME $TRETCH!"


(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)

Title: Re: Official Desensitization plan Begins!
Post by: demografx on November 23, 2012, 03:59:48 PM

Our POIS Medical Research Funding Progress!

(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)
Title: Re: Official Desensitization plan Begins!
Post by: jotape_chile on December 06, 2012, 06:40:23 AM
Hello everyone...

No further news on my treatment.
Next week I got session.

The only news is that the Kurtosis method ain't working anymore... so I am back with my usual symptoms after an O. Bad luck with this methods again, but still hoping that desenz works at the end.

Will keep you updated.

Regards,

JP
Title: Re: Official Desensitization plan Begins!
Post by: jotape_chile on December 12, 2012, 06:46:39 PM
Hi everyone again.

Today had another desenz session. My progression is as follows:

Desenzitization treatment evolution         
         
DATE         CONCENTRATION   EFFECT   
         
29-06-2011              Prick test +   
13-07-2011   1/40,000   No POIS   
27-07-2011   1/40,000   No POIS   
17-08-2011   1/20,000   No POIS   
07-09-2011   1/20,000   No POIS   
24-09-2011   1/10,000   POIS   
05-10-2011   1/10,000   POIS   
19-10-2011   1/10,000   POIS   
02-11-2011   1/10,000   POIS   
23-11-2011   1/10,000   POIS   
14-12-2011   1/10,000   POIS   
11-01-2012   1/5,000     POIS   
SUSPENDED         
11-06-2012   1/5,000      POIS   
25-06-2012   1/2,500      POIS   
03-07-2012   1/1,250      POIS   
23-07-2012   1/625         POIS   
23-08-2012   1/315         POIS   (Niacin)
03-09-2012   1/105         POIS   (Niacin)
01-10-2012   1/50           POIS   (Niacin)
14-11-2012   1/25           POIS - Massive fatigue   (Kurtosis)
12-12-1012   1/10           POIS


Again started feeling POIS symptoms after a couple of hours. Next session is on January 9th.
No further news.

Regards,

JP
Title: Re: Official Desensitization plan Begins!
Post by: demografx on December 12, 2012, 08:32:13 PM
Most may remember "Squiqqy" in Laverne and Shirley.. he has gone much of his life with a
complex disorder that makes living a pain! It's not POIS, but if you watch this video you'll see
that we have a lot in common.

http://www.youtube.com/watch?v=ubgURSn45jE&sns=em

He knows about us and offers us all of his wishes, that we push hard, as he has done in his life, to beat
this thing. Our solution and the solution for all the POIS sufferes of the world... even those who haven't
heard about our forum, is through RESEARCH

We are ALMOST THERE!!!

ONLY $9,000 more to go and POIS will *finally* begin SERIOUS MEDICAL RESEARCH towards our cure!

Please give generously. To yourself! NOW!

Click here to PLEASE donate:


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on December 13, 2012, 06:39:56 PM
JP, I talked with my doctor who does the desens. He said that it is normal that the injection causes POIS. He said that especially if you are going to fast with the dillution. So ask you doctor if he slows down.
When my arm was hurt because of the injection (for a few weeks) my doctor did the same dillution as the last time.
Title: Re: Official Desensitization plan Begins!
Post by: rock27 on December 14, 2012, 05:55:28 PM
JP,

1.did you get any improvement from the desenz so far?
2. you say you get pois symptoms after about every shot. Are these smaller after each shot, staying constant, or increasing?

Title: Re: Official Desensitization plan Begins!
Post by: jotape_chile on December 18, 2012, 10:47:28 AM
Dear Vande:

My arm hurt a couple of times, but this last time did not. I had the POIS anyways. I'd rather go this rythm, so I can reach faster the 1/1 dilution for a while and then try out with less concentration. Have you tried that? Going on less dilution? Maybe ther you do not get the POIS.

Dear Rock27:

1. Until now I have not get any improvements at all. The only "positive" thing was that my body reacted to my own semen shots, causing me POIS.
2. Since the first time I got the POIS after a shot (see chart) I have felt the same POIS effect. Not better, not worse... just the same. I hope as time passes by this situation changes.


For the stats: this year I have had 61 POIS days, including matsurbation, O's, wet dreams and the desenz. I think it's just too much.
I am hoping to get a relief in a short term, cause this is really pissing me off.

Hope you are doing well.

JP
Title: Re: Official Desensitization plan Begins!
Post by: rock27 on December 18, 2012, 04:30:56 PM
Dear JP,
thanks for sharing. I am not an expert, but out of common sense I would expect an improvement when you've gotten this low. Maybe ask your doctor how he determines next concentration? Again, common sense would say you've gone too fast, so really bring this facts you stated above to the attention of your allergist!
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on December 19, 2012, 07:31:13 PM
Yes JP, I had pain in my arm twice. And both times the dillution was the same af before. So it didn't go up. Ask the doctor if he can do the same dillution as 1 appointment before.

It's a pity that desens doesn't help you much. I read the papers of prof. dr. Waldinger. There were two cases. One guy had 40 % less POIS and the other guy I think 90 % less. There was one big difference between this two men. The 40 % guy had wet dreams, the other didn't. And I am lucky I don't have wet dreams. I am not sure if there is a connection. But maybe... Hang on there! And good luck!
Title: Re: Official Desensitization plan Begins!
Post by: demografx on December 19, 2012, 08:30:15 PM

(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E

We only have ****12 weeks***** to raise ~$9,000 "FOR OUR 2013 POIS 'START YEAR"!

WE CAN DO IT! Now!!
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: Official Desensitization plan Begins!
Post by: Andy451 on January 15, 2013, 06:54:29 PM
Ive been doing a desenz treatment for close close to 9 months now am @ 1-700 and hit a wall. I started at 1-80,000 and have seen some improvement with the injections, but nothing consistent. The last two injections actually increased symptoms which have slowly progressed after a weeks break from the treatment. Anyone experience similar reactions? My doctors and I are experimenting with the dose and possibly increasing the length of time between injections from one to two weeks.

Open to suggestions..
Title: Re: Official Desensitization plan Begins!
Post by: jotape_chile on January 24, 2013, 09:18:06 AM
Hi everyone. I'm back.

Finally I reached the 1/1 concentration, and as usual, had the after POIS.
My desenzitization treatment evolution has been as follows:       
         
DATE         CONCENTRATION   EFFECT   
         
29-06-2011              Prick test +   
13-07-2011   1/40,000   No POIS   
27-07-2011   1/40,000   No POIS   
17-08-2011   1/20,000   No POIS   
07-09-2011   1/20,000   No POIS   
24-09-2011   1/10,000   POIS   
05-10-2011   1/10,000   POIS   
19-10-2011   1/10,000   POIS   
02-11-2011   1/10,000   POIS   
23-11-2011   1/10,000   POIS   
14-12-2011   1/10,000   POIS   
11-01-2012   1/5,000     POIS   
SUSPENDED         
11-06-2012   1/5,000      POIS   
25-06-2012   1/2,500      POIS   
03-07-2012   1/1,250      POIS   
23-07-2012   1/625         POIS   
23-08-2012   1/315         POIS   
03-09-2012   1/105         POIS   
01-10-2012   1/50           POIS   
14-11-2012   1/25           POIS
12-12-2012   1/10           POIS
23-01-2013   1/1             POIS

According to my doctor, I will continue having the 1/1 injections once a month until this symptoms dissapear.
I am happy to have reached the direct sample into my arm. Seems to me as a milestone after a long time. Things should start to get better during this year I think.
If this does not happen, at least I would have tried...

Hope to hear some comments.
Best regards,

Juan Pablo from Chile.

JP


Title: Re: Official Desensitization plan Begins!
Post by: LAPOISSE on January 24, 2013, 10:59:12 AM
Hi JP,

But what you think  now? you started 18month ago...you should feel some improvment ? Do you think it works ?
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on January 25, 2013, 07:05:00 AM
LAPOISSE,

I can't answer for JP, but it will probably depend on what happens from here on.

His system has been pushed to the limit, while incrementing the dosage, so he is always in POIS, well every 2 weeks when he gets his shots. Surely that's tough going and probably wouldn't have let up during the incrementing dosage.

Now that he has reached 100%, either he will start to accustom to that dosage and begin to feel better, or stay the same.

Probably the proof of the pudding will start in these next months.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on January 25, 2013, 10:40:55 AM
JP: 1/1 (only semen) is not possible. There has to be a small dillution because semen alone can't be injected. It's not runny.

When the max dillution is reached you can see a few times progress. But after that it's a few months the same dillution to make sure the4 allergy is not coming back.
Title: Re: Official Desensitization plan Begins!
Post by: LAPOISSE on January 25, 2013, 10:57:15 AM
What about you Vanden ? How do you feel?
Title: Re: Official Desensitization plan Begins!
Post by: jotape_chile on January 28, 2013, 11:16:55 AM
Hi everyone,

Well... I can tell you it is possible. I saw it with my own eyes: my semen being introduced directly to the syringe and then shot to my arm.
It hurt a little, and had a red spot during the rest of the day.
POIS as usual, but I am hoping for an improvement during this year. If by dember I got no advances, I will give it up... cause I am not feeling any better after each shot.

My next session is by the end of February.

I will be posting any news.

JP
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on January 28, 2013, 06:40:32 PM
Lapoisse, I am ok. I have 70 % less symptoms.

My main symptoms:
1. Sinusitis and otitis. I can solve that problem by removing my tonsils. I hope that I can go to the hospital within a few weeks.
2. Acne. I think the problems with my tonsils cause the acne. We shall see what the result will be.
3. UTI. I don't have a sollution for that problem yet.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on February 06, 2013, 06:03:01 PM
Today I had an injection of 10/1. 100 % semen is possible. For now 10/1 is the max for me. But maybe it will go up more.
Title: Re: Official Desensitization plan Begins!
Post by: Egordon on February 09, 2013, 12:53:00 AM
JP,

I know this question may sound a bit presumptuous but i've got to ask it: Are you sure that you haven't felt an improvement? I only ask because I too am fairly far along in my desens and, until recently, when I would orgasm or get my injections without having taken niacin first it would feel like I was back in the same-old pre-sensitization-level POIS. Even then, though, I realized that because the POIS was so stifling and because it severely impaired my cognitive function, it made sensing incremental changes in my condition very difficult. You see, when I would have an unprotected O it seemed I felt as bad as always, but when I would use niacin I could tell that my body's reaction to the orgasm was far less severe. Initially, niacin only somewhat worked for me; after using it I would feel MUCH better than I would've if I had orgasmed without taking it, but it was still only a 60-70% improvement. Further, it would still take about 3 days for me to get to a point where I'd feel comfortable engaging in public speaking, leading meetings and taking on a truly social character. Post-desensitization, however, niacin would make me feel 100% better within a few hours. Likewise, when I first began using NSAIDs to erase the symptoms of POIS I had to use 2 (200mg) Celebrex to wipe away all my symptoms. Now, I only need 50mg.

All of which is just a roundabout way of saying that although desensitization may not have improved your condition as much as you expected, it may have had a really significant (but, at times, hard to detect) impact.

I think that many people (for completely understandable reasons) go into the Desens process expecting to be cured of POIS altogether, and to be given the ability to live like a completely normal person who never worries about their orgasms. But I suspect that the truth of desens is that for most people it only reduces POIS 50-75% -- enough to make it completely manageable, but not enough to allow you to forget about it altogether. That's been my experience, at least.
Title: Re: Official Desensitization plan Begins!
Post by: demografx on February 09, 2013, 04:07:23 PM
Today I had an injection of 10/1. 100 % semen is possible. For now 10/1 is the max for me. But maybe it will go up more.

Van, thanks for your pioneering experimental work. I wish you best success.
Demo
Title: Re: Official Desensitization plan Begins!
Post by: fidalgo on March 11, 2013, 10:13:51 AM
Van, I have a doubt. You said you have a great improve in Pois doing the dessenssibilization. I want to know if you have less symptoms when you drink coffee too.

Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on March 13, 2013, 05:12:52 PM
Fidalgo, I didn't stop drinking coffee. So my answer is yes.
Title: Re: Official Desensitization plan Begins!
Post by: Egordon on March 28, 2013, 03:10:55 AM
For anyone currently interested, my treatments have progressed significantly and i'm currently at a dilution of 1/10 (I forget exactly how much solution they injected last time, but I'm about 3 shots away from being at my maintenance dose... assuming I don't go higher like Van has).

The impact has been huge! Pre-treatment, I required 4 days to recover; that's now been reduced to about 7 hours.

I'll continue to update you all as developments arise.
Title: Re: Official Desensitization plan Begins!
Post by: LAPOISSE on March 28, 2013, 03:52:58 AM
That's amazing for me ; what was your exact symtoms before(sorry if you already described it) ? ; what is theory behind that ? Where do you do your dessens ?
Title: Re: Official Desensitization plan Begins!
Post by: FornicationDENIED on March 28, 2013, 12:25:02 PM
How could you convince anyone that POIS is real and demand a dessen process?
Title: Re: Official Desensitization plan Begins!
Post by: LAPOISSE on March 29, 2013, 01:32:38 PM
Lapoisse, I am ok. I have 70 % less symptoms.

My main symptoms:
1. Sinusitis and otitis. I can solve that problem by removing my tonsils. I hope that I can go to the hospital within a few weeks.
2. Acne. I think the problems with my tonsils cause the acne. We shall see what the result will be.
3. UTI. I don't have a sollution for that problem yet.

OK, I've none of this symtoms ; There is definitly at least two kind of POIS ;

I dont' feel concerned by the desens solution ; But it's great that it works for you guys ; For the persons that experienced mostly cognitives symtoms, we need to find our cure
Title: Re: Official Desensitization plan Begins!
Post by: Egordon on March 29, 2013, 02:54:50 PM
Lapoisse,

My symptoms are almost exclusively cognitive: general fatigue, laziness, extreme difficulty thinking quickly or clearly, anxiety (produced by the difficulty responding to others quickly and clearly), etc. I also get some uncomfortable non-cognitive symptoms, which I suspect are produced by the same inflammation causing the cognitive ones:  pressure behind eyes, partial closure of my left eye, pressure in the bridge of my nose, etc. You definitely should not think that desens is only for people with non-cognitive symptoms. I'm nearly completely in control of my symptoms because of desens and Non-Steroidal Anti-inflammatory drugs.

Also, you may have misunderstood what Van was trying to say. It seems to me that he was talking about his remaining symptoms, not his initial symptoms.   

Please let me know if you have any other questions! I'd be happy to share my desens experience.
Title: Re: Official Desensitization plan Begins!
Post by: LAPOISSE on March 29, 2013, 04:04:58 PM
Egordon,

First of All your testimony is very encouraging ; thanks you for sharing.

Second of all, yes, I jumped into conclusion too quickly ;as far as I understand It is just amazing if POIS is "just" an allergy as described Dr Waldinger ;

The good thing for me is (i) I get pretty nice relief from NSAID's(I use ketoprophen) but i'll probably try Celebrex and (ii) my symtoms are pretty close to yours regarding the way you described them.

I have some questions :
-Where you positive to skin prick test ? How was the test done?(I just tried to put semen in my arm and used a needle but no reaction)
-Where do you live ? How did you convince someone to do desens ?

Thank you!
-Did you have Symtoms just when getting aroused ?
Title: Re: Official Desensitization plan Begins!
Post by: Egordon on March 29, 2013, 05:14:24 PM
Hey Lapoisse,

I'm glad I could help!

I did indeed test positive to the skin prick test but only after extensive prodding from an allergist. You probably shouldn't do the test yourself, as you're exposing yourself to a risk of systemic reaction and likely lack the medical technology to carry it out effectively. Besides, an allergist is unlikely to begin desens treatment with you without acquiring a positive allergy test, so you'll have to have a professional administer it anyway.

We began my test at a dilution of something like 1:30,000 (to which some members have tested positive) but I didn't receive an affirmative positive until something like 1:10. This took about 3.5 hours and 7 or 8 attempts. So don't let a doctor convince you that you aren't going to react just because you don't react at a really high dilution. Insist on being tested at closer to "full concentrate."

I live in Berkeley, California and explained my ailment to a General Practitioner, who then referred me to an allergist. At each of these consultations, I made sure to take several peer-reviewed scientific articles on POIS and a few more accessible newspaper articles on the disorder; each of these made my story more credible in their eyes. I then described my symptoms (I had abstained for a few days to ensure that I was able to do so articulately), my current treatment regimen (niacin) and asked about desensitization. I was VERY fortunate, in that I was met by sympathetic doctors, who were willing to listen to my story and investigate my disorder; not everyone has been so lucky. I do, though, think my odds of seeming credible were boosted by the literature I brought and my giving an articulate description of my symptoms. If you do the same, you should at least be able to get a doctor to give you an allergy test.

As for the NSAIDs, I don't know much about ketoprophen but whatever you take should probably remove more than 50% of your symptoms. I take Celebrex and I works well, but I'm actually only taking it because I have asthma and it's the one NSAID that asthmatics can take. Otherwise, I'd probably be taking a more powerful drug (like indomethacin, maybe). I'd recommend that you start by going to an allergist with your story and all the (favorable) literature on the disorder, and then ask him what he would recommend to a patient experiencing inflammation triggered by an autoimmune disorder.

Best of Luck!

(P.S. I'd give you my doctor's name but I already tried to refer another member of the board and he declined the opportunity to work with them. Because the treatment is new and somewhat experimental, I guess he's only comfortable working with one POISer for now.)   

Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on March 30, 2013, 07:07:18 PM
That's great to hear Egordon!

Lapoisse, in the first group in the papers of dr. Waldinger there were a few people who have just a little relief and some have a major relief.

My problems with UTI could have been caused by desens. Because the defense mechanism of the body doesn't react so strong against POIS because of the desens. But that could mean that your defence against UTI is also less. But I hope this defense mechanism will be ok when the desens is over. Now I doing desens for almost 2 years. I think there is 1 year more.

My doctor expects a lot of the operation of my tonsils. I hope to know the effect about a few weeks.
Title: Re: Official Desensitization plan Begins!
Post by: Prancer on March 31, 2013, 07:20:03 AM
We're glad you're feeling better from your desens Egordon. 8) Yes, please keep us updated. I'm very interested in your new developments and I have very similar symptoms that you described early on.
Title: Re: Official Desensitization plan Begins!
Post by: demografx on April 01, 2013, 12:28:04 AM

[LAPOISSE], I'd give you my doctor's name but I already tried to refer another member of the board and he declined the opportunity to work with them. Because the treatment is new and somewhat experimental, I guess he's only comfortable working with one POISer for now.


I had a similar experience with my doctor!
Title: Re: Official Desensitization plan Begins!
Post by: jotape_chile on April 03, 2013, 07:30:34 AM
Hi everyone... sorry for being out of the forum. Sometimes it stresses me a bit

Well... the situatios is as follows. I am having a hard believing in this method. It has been a hard time arriving to the 1/1 concentration. POIS everytime.
I do not recall who asked me "?Have you felt ANY relief during the treatment?". Unfortunately not... and I'm very disencouraged by this.

Today I have an appointment again, and I really don't want to auto-POIS me.
Maybe I should follow Vande's advice and slow down... at his time I'm having 1 shot at a month, and though it seems not much, it sill affects me a lot and puts me under a lot of stress.

I think I'll cancel todays appointment... will re think about this method. I am very, very disencouraged by the results. As you can see it's been 1 1/2 years, and I still do not see ANY advance... far less a cure.


My dezens has been going as follows.

DATE         CONCENTRATION   EFFECT   
         
29-06-2011              Prick test +   
13-07-2011   1/40,000   No POIS   
27-07-2011   1/40,000   No POIS   
17-08-2011   1/20,000   No POIS   
07-09-2011   1/20,000   No POIS   
24-09-2011   1/10,000   POIS   
05-10-2011   1/10,000   POIS   
19-10-2011   1/10,000   POIS   
02-11-2011   1/10,000   POIS   
23-11-2011   1/10,000   POIS   
14-12-2011   1/10,000   POIS   
11-01-2012   1/5,000     POIS   
SUSPENDED         
11-06-2012   1/5,000      POIS   
25-06-2012   1/2,500      POIS   
03-07-2012   1/1,250      POIS   
23-07-2012   1/625         POIS   
23-08-2012   1/315         POIS   
03-09-2012   1/105         POIS   
01-10-2012   1/50           POIS   
14-11-2012   1/25           POIS
12-12-2012   1/10           POIS
23-01-2013   1/1             POIS
27-02-2013   1/1             POIS

Thanks everyone.

JP
Title: Re: Official Desensitization plan Begins!
Post by: Chris on April 03, 2013, 10:01:19 AM
If there is not even a slightly relief why continuing ?
Title: Re: Official Desensitization plan Begins!
Post by: Egordon on April 03, 2013, 02:56:16 PM
JP,

I suspect you just went up far far far too fast, and that you're body still isn't comfortable with the dilutions being administered. I had a somewhat similar problem recently (although I undertook the treatment at a far slower rate than you): when I reached the 1/10 dilution, each time my doctor tried to give me a larger dose of that concentration the glands in my neck began to swell. (I recognize that this isn't quite as bad as getting your symptoms, but for me and my medical staff is was alarming because it would feel as if my throat was closing each time i'd get a shot.) My doctor responded to it by scaling my doses back 1 month and administering this injection until this reaction stopped happening (it took a total of 4 times). After that, they continued the escalation in my dose and i felt far better.

Long story short, if you go up too fast, it makes it more likely that whatever negative symptoms you experience won't go away. 
Title: Re: Official Desensitization plan Begins!
Post by: b_jim on April 04, 2013, 04:34:45 AM
I tried to made a pr1ck-test myself (pure semen). The result is negative, the area is not bigger than test with water. Maybe should i try to make an intra-dermis with pure semen myself.

-
 
The other point is I try to remove semen after each ejaculation since 6-7 months (1orgasm /week)
I wonder if the fact to avoid/reduce semen exposure is not a form of desensitization.
I have less symptoms this year.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on April 06, 2013, 07:42:12 PM
JP, I am sorry to hear that. There could be a few reasons why it doesn't work for you. 1. Maybe your doctor goes too fast. 2. Maybe desens simply doesn't work for you. It's up to you if you want to give it another try. Goodluck!
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on April 06, 2013, 07:45:30 PM
B-Jim, be carefull. You know about the dangers and that you can get into shock.

I don't think that removing the semen is a form of desens. With desens you confront your body with something in a bigger dose than usual.
But if removing the semen helps you, that might support the allergy theory in your case. Goodluck!
Title: Re: Official Desensitization plan Begins!
Post by: b_jim on April 13, 2013, 03:06:08 AM
I listened to you but i made another test. :)  I remember last time I had a nocturnal emission I definitely had red skin coloration on my sex.
I tried another time and after 20 min of contact with semen that's not clear. I have some red area anyway.
Anyway I'm not as allergic as some guys here. And maybe my allergy has been reduced last months. Since end of 2012 year I remove semen after each ejaculation to reduce the contact.

Title: Re: Official Desensitization plan Begins!
Post by: Egordon on April 23, 2013, 11:12:02 PM
Van,

Who exactly is doing your injections and are they basing their procedures off of a particular peer-reviewed paper? I'm having some trouble getting my doctor to go higher than 1/1. He's suggested that it either wouldn't be injectable or he wouldn't be able to give me a consistent dose. Any tips?
Title: Re: Official Desensitization plan Begins!
Post by: jotape_chile on May 22, 2013, 05:20:39 PM
Hello...

I gave up this treatment.

I found no advance in nearly 18 months. Nothing, absolutely nothing.
I won't go again just to pay for a treatment that just makes me feel sick, giving me a kind of "voluntary" POIS.
I'm tired... I'm sorry guys. This is not working for me and I shall try to live with this nightmare.
You can reach me in my e-mail i case you need information or something else.
Regards,

JP
Title: Re: Official Desensitization plan Begins!
Post by: Stef on May 22, 2013, 07:40:49 PM
Hello...

I gave up this treatment.

I found no advance in nearly 18 months. Nothing, absolutely nothing.
I won't go again just to pay for a treatment that just makes me feel sick, giving me a kind of "voluntary" POIS.
I'm tired... I'm sorry guys. This is not working for me and I shall try to live with this nightmare.
You can reach me in my e-mail i case you need information or something else.
Regards,

JP


Hi JP and Everyone!

First of all -- to all of you -- you have received more than just a few applications for your POIS grant!!!  I'm not in a position to judge them, and am not allowed to say exactly how many, from whom, etc. (This is the general request of all researchers applying for any grant, and has become a very a strong guideline at NORD). But -- these applications are SERIOUS!! That I can comfortably tell you without breaking any of the rules.

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.

(But that's all I can say -- better quit while I'm ahead!)

Second -- JP, don't let this experience leave you feeling hopeless or down-trodden. Don't be sorry about anything! Yes, you are going to have to "live with this nightmare," a little longer. (It really is quite a nightmare!!!!)

But POIS will be understood -- and the answers/treatment will follow -- perhaps very quickly.  (Honestly -- I just do not think you're going to be waiting long.)

Try to keep remembering -- at this moment, no one knows what POIS is!  You're all on the way to finding out through your research grant, but right now -- there's no answer -- nothing!

Dr. Waldinger, who put POIS on the map, without question would agree. No one knows what POIS is.

(I know -- I sound like a broken record!)

Without ever having communicated with Dr. Waldinger -- he is a scientist, and would agree -- there has been no sound, scientific research.  He has a hypothesis that POIS is an allergic condition -- which may or may not be on track. 

(FYI -- I write this with complete, total respect for Dr. Waldinger and his team!)

Without funding, there's no research -- and with no research, there are no answers. It's just that simple.

And now you've got the funding for the research.  :)

There has never before been funding for POIS research -- do you all realize this??!!!!  So many of you men on this and the other forum donated what you could -- and with the constant encouragement of demografx and Daveman -- you all pulled together and did it! Demo and Daveman never gave up on encouraging everyone -- and they both walked the walk, also!

(I think demo has amassed a secret stash of animated gifs -- just for POIS donations!) 

The question, "What is POIS" -- will likely be answered very soon.

So, JP -- and everyone -- stay strong -- and believe in your strength. Do not give up seeking treatments to tide you over until the true answers are discovered.

Please just be safe and careful while finding ways to get yourselves through this misery.

The answers are around the corner!
 
Stef
Title: Re: Official Desensitization plan Begins!
Post by: Ccconfucius on May 22, 2013, 11:47:10 PM
Hello...

I gave up this treatment.

I found no advance in nearly 18 months. Nothing, absolutely nothing.
I won't go again just to pay for a treatment that just makes me feel sick, giving me a kind of "voluntary" POIS.
I'm tired... I'm sorry guys. This is not working for me and I shall try to live with this nightmare.
You can reach me in my e-mail i case you need information or something else.
Regards,

JP
sorry it did not work for you. you should try other remedies that have helped others one might just help you  a lot.
Title: Re: Official Desensitization plan Begins!
Post by: poiseidon on May 24, 2013, 02:13:38 AM
you made me feel good with your words stef. i just hope you re right too..

bless
Title: Re: Official Desensitization plan Begins!
Post by: Clycos on May 24, 2013, 03:00:15 PM
This is great news thank you stef!!
Title: Re: Official Desensitization plan Begins!
Post by: demografx on June 05, 2013, 07:20:02 PM
Hello...

I gave up this [desensitization] treatment.

I found no advance in nearly 18 months. Nothing, absolutely nothing.
I won't go again just to pay for a treatment that just makes me feel sick, giving me a kind of "voluntary" POIS.
I'm tired... I'm sorry guys. This is not working for me and I shall try to live with this nightmare.
You can reach me in my e-mail i case you need information or something else.
Regards,

JP


JP, I am very sorry to hear this. Please don't give up, we WILL find  Y  O  U  R  solution!!!
Title: Re: Official Desensitization plan Begins!
Post by: jotape_chile on June 06, 2013, 12:38:02 PM
Dear friends... thanks a lot for your support.
I do not feel sorry for myself because of the failure in my treatment.
Clearly some accomplishments were reached: Semen inyections caused me POIS, which makes me think this could really be an allergy (or else, who knows). But some relationship exists.

Unfortunately I did not experience any relief in 1,5 years. This procedure cost me dearly: the strong POIS I had the day of the procedure and the day after affected my performance in my job, and many times I could not even go. I was fired last april.
I will give a try to Niacin again... worked for me once, but not a second time.

I thank you all the support, and will continue posting here. Again: if anyone wants to contact me, you can e-mail me :-)
Best regards, we will find a cure.

JP
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on June 10, 2013, 05:13:06 PM
Sorry to hear that JP. I hope you will find a new job and a treatment where you can find some relief. Yes you should try Niacin again. You never know. Good luck!
Title: Re: The Desensitization plan Begins!
Post by: demografx on June 12, 2013, 02:05:09 PM
By the way you can say prick prick prick here!



But do I have to say pen.is? ;D

<ducking>
Title: Re: Official Desensitization plan Begins!
Post by: demografx on June 13, 2013, 07:31:43 PM
[Posted by new forum member, "yasienhossam", representing medical researchers who sign this posted letter. Posted Letter addressed to Dr. Marcel Waldinger]

Dear Prof Waldinger,

It has given us great honor when the editors of F1000 Research had told us that you will be one of the reviewers of our paper but we were astonished when we read your response which  said that you refused  our work that was accepted (with reservation) by the other 3 referees.  We think and feel that it was not fair enough.
 Actually we respect your own opinion but we are surprised!; how it comes to reject a case report of POIS (the rare disease) and say that you encourage publication in that topic?!. Is it related to  what you think that; the idea of atopy may be a precipitating factor for POIS  is yours and not ours ?!.  We think that this is not true. This is because we discovered our case by the end of 2009 and at that time you have only one publication in 2002- in which you didn't refer at all to atopy. We have found that our patient is atopic and in addition to the cognitive  and body pains he feels post orgasmic; his atopy flares  up  eye irritation with severe body itching. By December 2009 and after preparing the report and before its publication we sent you 3 e-mails with about one week intervals,  by the full length paper to ask you your experience as the only reporter of this syndrome - at that time -  but sadly enough we didn't receive any reply.  Please, return back to your archive. Moreover;  in 2010; we shared the ISSM forum by this case report  also before you mention at all any relation of POIS to atopy -  you mentioned it only in your publication at 2011 -  and many of our colleagues who are ISSM members  shared by comments and discussion ; we remember that one of them was Prof. David Goldmeier. Please go back to the ISSM Forum 2010. This case report was presented  as a poster in the 20th World Congress for Sexual Health, held in June 12- 16, 2011, Glasgow, UK  , and published in its  proceedings . For the before mentioned reasons we think that; it is ours and not yours that; atopy may be a precipitating factor for POIS and we must ask about and check for it in any of POIS cases.
Our Dear Dr  Waldinger, in your reply one of the reasons for which you refused our case report -as you stated - is that we mentioned that; NSAIDs, tramadol and SSRIs may help and you didn't find any response to these drugs. We want to remind you that this is not our findings  but the references mentioned and our patient didn?t get any benefit from trying these drugs;  please you can read our case report again !.
What we feel very important and we want to discuss is the skin prick test as a diagnostic test for allergy. Do you think that it is a reliable one in this regard?  is it  enough to reach the final conclusion that POIS patients are allergic to their own semen and that this is the cause of POIS?. Basically; we know -  and it is scientifically proved -  that this test  has many false positive and negative results. Moreover; we as andrologists ; knew - and it is scientifically proved as well that; our semen is foreign for our body and our  immune system.  Immunologic tolerance to it  is not present as it formed only after our puberty where the immune system didn't identify it in utero. For this reason our God totally separated it from our immune system by what is well known now as the very competent Blood  Testis barrier that is formed by the highly efficient Sertoli Sertoli cell junctional complex.  It is not - as you mentioned on you tube - a hypothetical membrane. Only in certain known pathologic conditions this barrier may be broken. If occurred we form auto-antibodies against our semen. So; when we inject our own semen intradermaly we will react positively to it  as it is a foreign antigen for us. Please try to apply this very simple prick test for you and your assistants using your own semen; mostly you will get a positive reaction without having POIS. Moreover; if we suppose that;  allergy to the patient's  own semen is the cause of POIS; it was mandatory to measure serum and seminal plasma anti-sperm antibodies; IgA, IgG and IgM, to do immuno bead and MAR testing and to report on the patient's seminogram changes as in such cases ? if this is true -  POIS patients will  be mostly infertile as well. So; as you depended only upon the unreliable  skin prick test  and for the afore mentioned scientific facts,  we  - and we think that we will be shared by anyone who is interested in andrology -    think that; your conclusion is not right and we can't scientifically accept  that the cause of POIS is allergy to own semen.  
Dear Prof, we are surprised; how it comes that; only from two patients ? without placebo control ? wants us to accept that; hyposensitization using the patient's own semen is the treatment of POIS!.  Although your last two papers are published in a highly respectable journal we are sorry to say that; this is not right from the scientific facts mentioned above and they are only two patients. We think that; any benefit  if any is not more than placebo.
 
Thanks,   
Prof. Dr Abdalla attia & Dr  Hossam Yasien
Andrology Unit,
Faculty of Medicine,
Minoufiya University,
Egypt

 = = = = = = = = = = = = = = = = = = = = = = = = =

yasienhossam, thank you for your excellent questioning!

I hope Dr. Waldinger will respond.

Best regards,
Demo

ps - contact info

Prof. dr. Marcel D. Waldinger
dr.m.d.waldinger@gmail.com




[The above was edited from the original below. Edits mostly include  "?" for ' and in some cases ? were removed. My apology if I inadvertently altered any original meaning by the author - demo]


Dear Prof Waldinger,
It has given us great honor when the editors of F1000 Research had told us that you will be one of the reviewers of our paper but we were astonished when we read your response which  said that you refused  our work that was accepted (with reservation) by the other 3 refrees.  We think and feel that it was not fare enough.
 Actually we respect your own opinion but we are surprised!; how it comes to reject a case report of POIS (the rare disease) and say that you encourage publication in that topic?!. Is it related to  what you think that; the idea of atopy may be a precipitating factor for POIS  is yours and not ours ?!.  We think that this is not true. This is because we discovered our case by the end of 2009 and at that time you have only one publication ?  2002- in which you didn?t refer at all to atopy. We have found that our patient is atopic and in addition to the cognitive  and body pains he feels post orgasmic; his atopy flares  up  ?  eye irritation with severe body itching. By December 2009 and after preparing the report and before its publication we send you 3 e-mails with about one week intervals,  by the full length paper to ask you your experience? as the only reporter of this syndrome - at that time -  but sadly enough we didn?t receive any reply.  Please, return back to your archive. Moreover;  in 2010; we shared the ISSM forum by this case report ? also before you mention at all any relation of POIS to atopy -  you mentioned it only in your publication at 2011 -  and many of our colleagues who are ISSM members  shared by comments and discussion ; we remember that one of them was Prof. David Goldmeier. Please go back to the ISSM Forum 2010. This case report was presented  as a poster in the 20th World Congress for Sexual Health, held in June 12- 16, 2011, Glasgow, UK  , and published in its  proceedings . For the before mentioned reasons we think that; it is ours and not yours that; atopy may be a precipitating factor for POIS and we must ask about and check for it in any of POIS cases.
Our Dear Dr  Waldinger, in your reply one of the reasons for which you refused our case report -as you stated - is that we mentioned that; NSAIDs, tramadol and SSRIs may help and you didn?t find any response to these drugs. We want to remind you that this is not our findings  but the references mentioned and our patient didn?t get any benefit from trying these drugs;  please you can read our case report again !.
What we feel very important and we want to discuss is the skin prick test as a diagnostic test for allergy. Do you think that it is a reliable one in this regard?  is it  enough to reach the final conclusion that POIS patients are allergic to their own semen and that this is the cause of POIS?. Basically; we know -  and it is scientifically proved -  that this test  has many false positive and negative results. Moreover; we as andrologists ; knew - and it is scientifically proved as well ?that; our semen is foreign for our body and our  immune system.  Immunologic tolerance to it  is not present as it formed only after our puberty where the immune system didn?t identify it in utero. For this reason our God totally separated it from our immune system by what is well known now as the very competent Blood ? Testis barrier that is formed by the highly efficient Sertoli ? Sertoli cell junctional complex.  It is not - as you mentioned on you tube - a hypothetical membrane. Only in certain known pathologic conditions this barrier may be broken. If occurred we form auto-antibodies against our semen. So; when we inject our own semen intradermaly we will react positively to it  as it is a foreign antigen for us. Please try to apply this very simple prick test for you and your assistants using your own semen; mostly you will get a positive reaction without having POIS. Moreover; if we suppose that;  allergy to the patient?s  own semen is the cause of POIS; it was mandatory to measure serum and seminal plasma anti-sperm antibodies; IgA, IgG and IgM, to do immuno bead and MAR testing and to report on the patint?s seminogram changes as in such cases ? if this is true -  POIS patients will  be mostly infertile as well. So; as you depended only upon the unreliable  skin prick test  and for the afore mentioned scientific facts,  we  - and we think that we will be shared by anyone who is interested in andrology -    think that; your conclusion is not right and we can?t scientifically accept  that the cause of POIS is allergy to own semen.  
Dear Prof, we are surprised; how it comes that; only from two patients ? without placebo control ? wants us to accept that; hyposensitization using the patient?s own semen is the treatment of POIS?!.  Although your last two papers are published in a highly respectable journal we are sorry to say that; this is not right from the scientific facts mentioned above and they are only two patients. We think that; any benefit ? if any ? is not more than placebo.
 
Thanks,   
Prof. Dr Abdalla attia & Dr  Hossam Yasien
Andrology Unit,
Faculty of Medicine,
Minoufiya University,
Egypt
Title: Re: Official Desensitization plan Begins!
Post by: demografx on June 14, 2013, 10:57:28 AM
[Posted by new forum member, "yasienhossam", representing medical researchers who sign this posted letter. Posted Letter addressed to Dr. Marcel Waldinger]

Dear Prof Waldinger,

It has given us great honor when the editors of F1000 Research had told us that you will be one of the reviewers of our paper but we were astonished when we read your response which  said that you refused  our work that was accepted (with reservation) by the other 3 referees.  We think and feel that it was not fair enough.
 Actually we respect your own opinion but we are surprised!; how it comes to reject a case report of POIS (the rare disease) and say that you encourage publication in that topic?!. Is it related to  what you think that; the idea of atopy may be a precipitating factor for POIS  is yours and not ours ?!.  We think that this is not true. This is because we discovered our case by the end of 2009 and at that time you have only one publication in 2002- in which you didn't refer at all to atopy. We have found that our patient is atopic and in addition to the cognitive  and body pains he feels post orgasmic; his atopy flares  up  eye irritation with severe body itching. By December 2009 and after preparing the report and before its publication we sent you 3 e-mails with about one week intervals,  by the full length paper to ask you your experience as the only reporter of this syndrome - at that time -  but sadly enough we didn't receive any reply.  Please, return back to your archive. Moreover;  in 2010; we shared the ISSM forum by this case report  also before you mention at all any relation of POIS to atopy -  you mentioned it only in your publication at 2011 -  and many of our colleagues who are ISSM members  shared by comments and discussion ; we remember that one of them was Prof. David Goldmeier. Please go back to the ISSM Forum 2010. This case report was presented  as a poster in the 20th World Congress for Sexual Health, held in June 12- 16, 2011, Glasgow, UK  , and published in its  proceedings . For the before mentioned reasons we think that; it is ours and not yours that; atopy may be a precipitating factor for POIS and we must ask about and check for it in any of POIS cases.
Our Dear Dr  Waldinger, in your reply one of the reasons for which you refused our case report -as you stated - is that we mentioned that; NSAIDs, tramadol and SSRIs may help and you didn't find any response to these drugs. We want to remind you that this is not our findings  but the references mentioned and our patient didn?t get any benefit from trying these drugs;  please you can read our case report again !.
What we feel very important and we want to discuss is the skin prick test as a diagnostic test for allergy. Do you think that it is a reliable one in this regard?  is it  enough to reach the final conclusion that POIS patients are allergic to their own semen and that this is the cause of POIS?. Basically; we know -  and it is scientifically proved -  that this test  has many false positive and negative results. Moreover; we as andrologists ; knew - and it is scientifically proved as well that; our semen is foreign for our body and our  immune system.  Immunologic tolerance to it  is not present as it formed only after our puberty where the immune system didn't identify it in utero. For this reason our God totally separated it from our immune system by what is well known now as the very competent Blood  Testis barrier that is formed by the highly efficient Sertoli Sertoli cell junctional complex.  It is not - as you mentioned on you tube - a hypothetical membrane. Only in certain known pathologic conditions this barrier may be broken. If occurred we form auto-antibodies against our semen. So; when we inject our own semen intradermaly we will react positively to it  as it is a foreign antigen for us. Please try to apply this very simple prick test for you and your assistants using your own semen; mostly you will get a positive reaction without having POIS. Moreover; if we suppose that;  allergy to the patient's  own semen is the cause of POIS; it was mandatory to measure serum and seminal plasma anti-sperm antibodies; IgA, IgG and IgM, to do immuno bead and MAR testing and to report on the patient's seminogram changes as in such cases ? if this is true -  POIS patients will  be mostly infertile as well. So; as you depended only upon the unreliable  skin prick test  and for the afore mentioned scientific facts,  we  - and we think that we will be shared by anyone who is interested in andrology -    think that; your conclusion is not right and we can't scientifically accept  that the cause of POIS is allergy to own semen.  
Dear Prof, we are surprised; how it comes that; only from two patients ? without placebo control ? wants us to accept that; hyposensitization using the patient's own semen is the treatment of POIS!.  Although your last two papers are published in a highly respectable journal we are sorry to say that; this is not right from the scientific facts mentioned above and they are only two patients. We think that; any benefit  if any is not more than placebo.
 
Thanks,   
Prof. Dr Abdalla attia & Dr  Hossam Yasien
Andrology Unit,
Faculty of Medicine,
Minoufiya University,
Egypt

 = = = = = = = = = = = = = = = = = = = = = = = = =

yasienhossam, thank you for your excellent questioning!

I hope Waldinger will respond.

Best regards,
Demo

ps - contact info

Prof. dr. Marcel D. Waldinger
dr.m.d.waldinger@gmail.com




Dear Drs. Attia and Yasein,

I was just advised by demografx of your post.

Please apply for the POIS grant!!!  We'll give you an extension on the deadline.

Here's a link to the application:   http://tinyurl.com/bwhbn5k (http://tinyurl.com/bwhbn5k)

FYI, we did send Dr. Attia the POIS RFP when it was first posted, because we had seen Dr. Attia's poster presentation from a conference that took place about one or two years ago.  Perhaps we had an incorrect email address for Dr. Attia.

Stefanie Putkowski, RN
NORD Research Program Administrator
research@rarediseases.org
Title: Re: Official Desensitization plan Begins!
Post by: demografx on June 14, 2013, 11:19:16 AM
This is the article that was NOT approved, i.e., (rejected) by Waldinger, according to the letter from Egypt:
http://f1000research.com/articles/2-113/v1
Title: Re: Official Desensitization plan Begins!
Post by: b_jim on June 16, 2013, 01:21:17 AM
Wow, experts quarrel :)

Quote
This is because we discovered our case by the end of 2009 and at that time you have only one publication ?  2002- in which you didn?t refer at all to atopy.

True, but in private messages and emails, Dr Waldinger suggested the hypotesis of immune system, first time in 2005 for me. In my first post, the press article ""Tired and sweaty after sex ?"was not modified and the orginal article was wrote in 2006-2007.


Anyway this new study is brilliant, thanks dr Attia, Yasien and Al-Ziny. Since the start of naked scientist Pois forum, we instinctively felt there are different forms of Pois, linked or not. And that's why our Pois Forum Center has different categories "Hormonal" "Auto-immune".
Title: Re: Official Desensitization plan Begins!
Post by: demografx on June 16, 2013, 02:03:49 AM
b_jim, if you would like to see these doctors apply to our 2013 POIS RFP:
http://tinyurl.com/bwhbn5k
please feel free to send an email to them all (   to Drs. Attia, Yasien and Al-Ziny)  via yasienhossam@yahoo.com Include the preceding link , and then ask them to please apply for an extension of our Grant deadline -- the doctors should send the request to
Stefanie Putkowski
POIS - NORD Program Administrator
rn@rarediseases.org

Thanks for all your commentary, b_jim, since 2007!


Title: Re: Official Desensitization plan Begins!
Post by: demografx on June 16, 2013, 10:17:34 AM
(http://i858.photobucket.com/albums/ab143/demografx/920624DD-43DC-4114-A0C7-4A77495964FE-301-0000001A77DDE4CC.jpg)

(http://i858.photobucket.com/albums/ab143/demografx/920624DD-43DC-4114-A0C7-4A77495964FE-301-0000001A77DDE4CC.jpg)

(http://i858.photobucket.com/albums/ab143/demografx/920624DD-43DC-4114-A0C7-4A77495964FE-301-0000001A77DDE4CC.jpg)

(http://i858.photobucket.com/albums/ab143/demografx/920624DD-43DC-4114-A0C7-4A77495964FE-301-0000001A77DDE4CC.jpg)

Help! b_jim, I couldn't resist stealing your icon!! Don't have me arrested for theft!  ;D
Title: Re: Official Desensitization plan Begins!
Post by: demografx on June 16, 2013, 10:19:23 AM
b_jim: "imitation is the sincerest form of flattery" -- old saying applies here!

Demo :)
Title: Re: Official Desensitization plan Begins!
Post by: poiseidon on June 16, 2013, 10:46:16 AM
There you go. A non-copyrighted version:)
Title: Re: Official Desensitization plan Begins!
Post by: poiseidon on June 16, 2013, 10:50:24 AM
(http://poiscenter.com/forums/index.php?action=dlattach;topic=11.0;attach=259;image)
Title: Re: Official Desensitization plan Begins!
Post by: demografx on June 16, 2013, 11:03:12 AM
Wow! Nice!
Title: Re: Official Desensitization plan Begins!
Post by: demografx on June 16, 2013, 04:23:43 PM
"Successful remedies" : http://www.helpmypois.info/

I like the 'Coming Soon' graphic layout of your "Successful Remedies".

Intrigued. Looking forward to seeing it when it's ready.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on June 19, 2013, 09:14:15 PM
You can make fun about desens. 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.
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on June 20, 2013, 11:41:09 AM
You can make fun about desens. 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.

Nobody is making fun of desens... it's not a laughing matter.

Perhaps there is some casual chat, maybe even humor, but it isn't directed in a negative manner to the desens.

It's true that some comments are serious, but it's not by any means "making fun". As I said, it's a serious matter.

I am glad that you have seen positive results. But the fact that proper controls were not enforced, DOES leave the potential for potentially complicated situations.

I'm sure none of your doctors, who are POIS free, would want to be injecting semen into their skin to test for negative responses.

IF, we have no anti-bodies, even though we have POIS, injecting semen into the skin could create a situation that never existed.

Desens procedures might even invalidate an individual as a test subject for a proper research. AND could even create a situation that
may not be resolvable when or if a proper POIS solution becomes available.

Of course, one can always take the chances.

Title: Re: Official Desensitization plan Begins!
Post by: Stef on June 20, 2013, 01:06:39 PM
You can make fun about desens. 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.

Hi Van!

First of all -- it's really good to hear from you since you've had the tonsillectomy!  I hope you're feeling much better since the surgery.

FYI -- in case it might be of interest -- I interpreted the cartoon about desensitization treatment for POIS as being completely PRO-DESENS!!!!  I absolutely did not see it as making fun of or mocking desens.

My interpretation of the cartoon was the exact opposite of yours!

In fact, I even sent a brief message about it to demo and Daveman -- because for me it seemed very biased in favor of desens -- as if desensitization is the only real treatment for POIS.

Desens may end up being a fantastic treatment for some. But for now, it's still a question -- just like niacin is a question.  No one has a clue as to why some treatments work for some but not for others. 

Anyway, I just felt compelled to tell you that I viewed that cartoon as being totally in favor of desensitization treatments.

Isn't it amazing how we all interpret things so differently!? 

Stef
Title: Re: Official Desensitization plan Begins!
Post by: demografx on June 20, 2013, 08:08:53 PM
Thank you Van, Stef, and Daveman!
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on June 20, 2013, 09:38:49 PM
Daveman, you can critisize desens. But as an admin you should be a bit neutral. But you and Demo have started a campagne, a smear, against desens. That's why I am sure that the grant will NOT go to a doctor who supports the auto immune theory. I don't have any confidence that there will be an objective view about where the grant should go.

Thank you Nordnurse. I am doing fine. I am sorry, but you are just helping Demo and Daveman. It's not just the cartoon. It's a campagne. It's a smear.
Title: Re: Official Desensitization plan Begins!
Post by: demografx on June 20, 2013, 10:15:46 PM
No, sir. I'm afraid you do not understand the concept of understanding theory. Which involves questions. Questions you don't like to hear. Answers you don't like to hear. I can say no more to allay anyone's concerns about our objectivity. That is exactly what Daveman and I are here to insure. And if we are wrong, there are a growing number of experts, here and on the outside, who correct us when we are wrong.

Best wishes with your desensitization.

But please don't malign the integrity (with your "smear campaign" accusation) of this Forum ever again.

Thanks.
Title: Re: Official Desensitization plan Begins!
Post by: demografx on June 21, 2013, 08:05:40 AM
[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

(http://farm4.hv-static.flickr.com/3201/2909686963_a2a3671f33.jpg)

POISers' Secret Island Retreat
Title: Re: Official Desensitization plan Begins!
Post by: demografx on June 21, 2013, 08:06:41 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.

Title: Re: Official Desensitization plan Begins!
Post by: demografx on June 22, 2013, 01:26:49 AM
You can make fun about desens. 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.

Nobody is making fun of desens... it's not a laughing matter.

Perhaps there is some casual chat, maybe even humor, but it isn't directed in a negative manner to the desens.

It's true that some comments are serious, but it's not by any means "making fun". As I said, it's a serious matter.

I am glad that you have seen positive results. But the fact that proper controls were not enforced, DOES leave the potential for potentially complicated situations.

I'm sure none of your doctors, who are POIS free, would want to be injecting semen into their skin to test for negative responses.

IF, we have no anti-bodies, even though we have POIS, injecting semen into the skin could create a situation that never existed.

Desens procedures might even invalidate an individual as a test subject for a proper research. AND could even create a situation that
may not be resolvable when or if a proper POIS solution becomes available.

Of course, one can always take the chances.



Brilliant summary. Thanks, Daveman!
Title: Re: Official Desensitization plan Begins!
Post by: FornicationDENIED on June 22, 2013, 11:17:29 AM
Seriously, has anyone done a IgE test after ejaculation before desens.?
Title: Re: Official Desensitization plan Begins!
Post by: demografx on June 22, 2013, 12:22:20 PM
Seriously, has anyone done a IgE test after ejaculation before desens.?

I think this has been asked twice.

Has anyone tested this ?
Title: Re: Official Desensitization plan Begins!
Post by: Ccconfucius on June 22, 2013, 07:18:05 PM
 i have and it was normal. I did igg iga and someothers to they all came out normal. I orgasmed like crazy days before the test and hour before the test.

Title: Re: Official Desensitization plan Begins!
Post by: Egordon 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.

Title: Re: Official Desensitization plan Begins!
Post by: demografx 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.


Title: Re: Official Desensitization plan Begins!
Post by: poisperson 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.     
Title: Re: Official Desensitization plan Begins!
Post by: Daveman 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.
Title: Re: Official Desensitization plan Begins!
Post by: FloppyBanana 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
Title: Re: Official Desensitization plan Begins!
Post by: demografx 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! :)
Title: Re: Official Desensitization plan Begins!
Post by: Egordon 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.)
Title: Re: Official Desensitization plan Begins!
Post by: Egordon 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.
Title: Re: Official Desensitization plan Begins!
Post by: demografx 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.
Title: Re: Official Desensitization plan Begins!
Post by: FloppyBanana 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
Title: Re: Official Desensitization plan Begins!
Post by: demografx 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.
Title: Re: Official Desensitization plan Begins!
Post by: Egordon 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?
Title: Re: Official Desensitization plan Begins!
Post by: FloppyBanana 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
Title: Re: Official Desensitization plan Begins!
Post by: Egordon 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.)
Title: Re: Official Desensitization plan Begins!
Post by: Daveman 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.

Title: Re: Official Desensitization plan Begins!
Post by: Egordon on July 07, 2013, 10:29:53 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.)

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.



The typical allergy test in America involves 3 pricks all at the same time: 1) the antigen (at a given dilution); 2) histimine; and 3) a "control" solution. The doctor compares the reaction that the antigen produces to that of the histimine and control to identify whether or not the reaction is abnormal. I think the idea is that a positive reaction will be significantly larger (and look different) than the mere injection of histimine, but it's been over a year since i got the test and i no longer remember.

Yes, my doctor is an allergist. Unfortunately, though, he's made clear that until he's done treating me he's not willing to take on any other POIS patients. (I've tried to refer him to someone in the past.) I think it's because the therapy is fairly novel and experimental for him.

 What were you hoping to use him for?
Title: Re: Official Desensitization plan Begins!
Post by: fidalgo on July 08, 2013, 04:04:02 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.)

You are mixing the two types of tests.  The first, the one that FB had done, is the prick test which is done in the surface of the skin. The one, with the injection, is the intradermal test.

I' ve done the two test. The prick I done too 1: 100 and is negative. The intradermal I was positive in 1: 10.000 . In the video, for a remember, Waldinger did the intradermal test. This confusion happens because Waldinger mix the name of the two tests in his survey (my doctor told me that. He thinks it happens because Waldinger isn't a allergist).
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on July 09, 2013, 06:15:42 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.)

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.



The typical allergy test in America involves 3 pricks all at the same time: 1) the antigen (at a given dilution); 2) histimine; and 3) a "control" solution. The doctor compares the reaction that the antigen produces to that of the histimine and control to identify whether or not the reaction is abnormal. I think the idea is that a positive reaction will be significantly larger (and look different) than the mere injection of histimine, but it's been over a year since i got the test and i no longer remember.

Yes, my doctor is an allergist. Unfortunately, though, he's made clear that until he's done treating me he's not willing to take on any other POIS patients. (I've tried to refer him to someone in the past.) I think it's because the therapy is fairly novel and experimental for him.

 What were you hoping to use him for?

For our members. If he is authorized, willing and knows what he is doing, it's better than our people doing the treatment themselves or going to someone that will just take them for their money.

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!
Title: Re: Official Desensitization plan Begins!
Post by: Egordon on July 09, 2013, 07:34:16 AM
For our members. If he is authorized, willing and knows what he is doing, it's better than our people doing the treatment themselves or going to someone that will just take them for their money.

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!

[/quote]

Your second point is a very good one, but it's also one that I think my doctor has probably considered. While I'm his first POIS patient, he has desensitized a number of women to the semen of their partners (with no complications), so I don't think he's especially worried about creating innapropriate antibodies. (You guys sometimes talk as though doctors haven't been desensitizing people to semen for decades. This isn't the case.) But I'll ask him. Perhaps they've been able to isolate the allergic compound with that disorder.

Your first point, though, is something you've long been asserting, and which i've long disagreed with. POIS patients get fairly peculiar symptoms upon being injected with semen. I, for instance, get general redness, strong stinging at the injection site, a tiny bit of swelling, and some of my cognitive symptoms. It's not clear to me how one could think these reactions are consistent with mere localized irritation rather than an allergic response. And what (scientific) evidence do you have for thinking as much?

Also, why does the fact that we've seen some ( -- many, really --) POISers that don't react to the skin-prick test make you think that there are non-POISers that would react. If anything, I think it's reasonable to draw the opposite inference. If semen is so irritating and causes this universal reaction, as you say, wouldn't all of our members react? I don't think there's much support -- scientific or speculative -- for your first contention.

I do appreciate your raising the first point, though, and intend to ask my doctor about it soon. And, although I haven't always agreed with the substance or means of your criticism, I hope you know that I respect your concern for the POIS community and your healthy skepticism of received wisdom.
Title: Re: Official Desensitization plan Begins!
Post by: Egordon on July 09, 2013, 07:50:16 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.)

You are mixing the two types of tests.  The first, the one that FB had done, is the prick test which is done in the surface of the skin. The one, with the injection, is the intradermal test.

I' ve done the two test. The prick I done too 1: 100 and is negative. The intradermal I was positive in 1: 10.000 . In the video, for a remember, Waldinger did the intradermal test. This confusion happens because Waldinger mix the name of the two tests in his survey (my doctor told me that. He thinks it happens because Waldinger isn't a allergist).

This is really interesting, FB. I didn't realize that intradermal tests were being performed. (I've never seen the video you mentioned.) As many of our members have had trouble getting positive reactions to the skin-prick test, perhaps this alternative should be advertised to people inclined towards the autoimmune theory.
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on July 09, 2013, 11:14:30 AM

For our members. If he is authorized, willing and knows what he is doing, it's better than our people doing the treatment themselves or going to someone that will just take them for their money.

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!


Your second point is a very good one, but it's also one that I think my doctor has probably considered. While I'm his first POIS patient, he has desensitized a number of women to the semen of their partners (with no complications), so I don't think he's especially worried about creating innapropriate antibodies. (You guys sometimes talk as though doctors haven't been desensitizing people to semen for decades. This isn't the case.) But I'll ask him. Perhaps they've been able to isolate the allergic compound with that disorder.

Your first point, though, is something you've long been asserting, and which i've long disagreed with. POIS patients get fairly peculiar symptoms upon being injected with semen. I, for instance, get general redness, strong stinging at the injection site, a tiny bit of swelling, and some of my cognitive symptoms. It's not clear to me how one could think these reactions are consistent with mere localized irritation rather than an allergic response. And what (scientific) evidence do you have for thinking as much?

Also, why does the fact that we've seen some ( -- many, really --) POISers that don't react to the skin-prick test make you think that there are non-POISers that would react. If anything, I think it's reasonable to draw the opposite inference. If semen is so irritating and causes this universal reaction, as you say, wouldn't all of our members react? I don't think there's much support -- scientific or speculative -- for your first contention.

I do appreciate your raising the first point, though, and intend to ask my doctor about it soon. And, although I haven't always agreed with the substance or means of your criticism, I hope you know that I respect your concern for the POIS community and your healthy skepticism of received wisdom.

There's a big difference between a woman's reaction to her husbands semen, and a man's reaction to his own semen.

The latter case involves one's own dna and is subject to differing mechanism. This material should not be on the other side of the blood barrier, especially if it is one's own!

I defy ANY of the allergists who are practicing desensitization for POIS to test non-POIS patients. If they all prove negative this would have a great impact on my (our) perception..... and probably many allergists' perception as well. This is the biggest stumbling block, WHY isn't someone working on it? Could it be that it is too risky, or prohibited? I don't know, just asking? But ask yourself. Doesn't it strike you as strange that it is not being done or hasn't been done?

Ask your allergist about this too? Why does he think it hasn't been done?


Title: Re: Official Desensitization plan Begins!
Post by: FloppyBanana on July 09, 2013, 12:54:12 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.)

You are mixing the two types of tests.  The first, the one that FB had done, is the prick test which is done in the surface of the skin. The one, with the injection, is the intradermal test.

I' ve done the two test. The prick I done too 1: 100 and is negative. The intradermal I was positive in 1: 10.000 . In the video, for a remember, Waldinger did the intradermal test. This confusion happens because Waldinger mix the name of the two tests in his survey (my doctor told me that. He thinks it happens because Waldinger isn't a allergist).

Thanks Fidalgo, for clearing that up!

Egordon - You can see in the below video that what is performed is definitely an intradermal test.

http://www.youtube.com/watch?v=1_kqIpGUYpI

Now I know what to ask for without creating a raft of confusion with these allergists/doctors.
FB (UK)
Title: Re: Official Desensitization plan Begins!
Post by: rock27 on July 11, 2013, 01:54:53 PM
There's a big difference between a woman's reaction to her husbands semen, and a man's reaction to his own semen.

The latter case involves one's own dna and is subject to differing mechanism. This material should not be on the other side of the blood barrier, especially if it is one's own!

I defy ANY of the allergists who are practicing desensitization for POIS to test non-POIS patients. If they all prove negative this would have a great impact on my (our) perception..... and probably many allergists' perception as well. This is the biggest stumbling block, WHY isn't someone working on it? Could it be that it is too risky, or prohibited? I don't know, just asking? But ask yourself. Doesn't it strike you as strange that it is not being done or hasn't been done?

Ask your allergist about this too? Why does he think it hasn't been done?




Research on this is needed but I don't believe sperm in normal males never comes in contact with their blood. When ejaculating the sperm travels and is not in the so called save (conclusive research on this?) testis.  It might meet an infection or injury and the whole penis feels very connected to blood vessels anyway. If we can proof there is contact between sperm and blood in normal males, we don't have to worry about injecting sperm and ethics can never be used as an excuse again.

And maybe when the sperm is broken down (when unused) it also somehow enters the bloodstream.  When I am fully loaded and not having ejaculated I already feel a bit more tired than usual. I think you mentioned this as well Daveman?


Title: Re: Official Desensitization plan Begins!
Post by: b_jim on July 12, 2013, 12:23:51 AM
Seriously, I want to make the desensitization myself.
What do I risk  ?
A mistake in dilution ? It doesn't seem more difficult than dillutions I made at school...
A mistake with syringue ? Just find a vein, no air bubble and hop.... subcutaneous
Anaphylactic shoke ? I already put pure semen on bloody scare to test. The reaction is not so powerfull. in my Pois.

Title: Re: Official Desensitization plan Begins!
Post by: Daveman on July 12, 2013, 08:33:43 AM
Seriously, I want to make the desensitization myself.
What do I risk  ?
A mistake in dilution ? It doesn't seem more difficult than dillutions I made at school...
A mistake with syringue ? Just find a vein, no air bubble and hop....
Anaphylactic shoke ? I already put pure semen on bloody scare to test. The reaction is not so powerfull. in my Pois.



Not in the veins, NEVER. See that's the problem!

We don't know what we are doing? We just might THINK we do.

Title: Re: Official Desensitization plan Begins!
Post by: b_jim on July 12, 2013, 09:33:45 AM
Hmm yes sorry. I mean injections under the skin (subcutaneous) not in veins  :-[  :P
I will ask my doctor if I can get "the little tool" to pr1ck the skin (dont find the word) to the pharmacy.

Anyway I tried once again to rub pure semen on my forearm with the same result : red spots appear after 15-20 min.
After a meal rich in carbohydrates, I had flush all the afternoon.
I'm as convinced by insuline role in my Pois as you are convinced by role of niacine.


Title: Re: Official Desensitization plan Begins!
Post by: rock27 on July 12, 2013, 12:05:50 PM
Seriously, I want to make the desensitization myself.
What do I risk  ?

It would be crazy to do desenz yourself. You would never know at what dilution you would get a heavy reaction and if your dilution is right what you think it is.
I have not heard about fatalities but I did hear about people doing it and having more reactions than in normal POIS, making their POIS worse and reactions that lasted more than 3 months. So it is Russian roulette to do it really. This is NOT a whisper campaign.
POIS can be caused by different things.
We really need a good diagnostic tool to know which one is your case.

For the record: I really believe in allergy(like) theory, but we need to have the diagnostic tools to know if it applies to you. I hope the research will get us there.
Please don't let us be dependent of dr. Waldinger, who likes to keep things secret (and be the first one to publish) and doesn't answer critical questions of allergists.


Take care
All the best
Thanks Demo and Daveman for keeping the forum alive for so long!




Title: Re: Official Desensitization plan Begins!
Post by: Daveman on July 12, 2013, 12:51:03 PM
Seriously, I want to make the desensitization myself.
What do I risk  ?

It would be crazy to do desenz yourself. You would never know at what dilution you would get a heavy reaction and if your dilution is right what you think it is.
I have not heard about fatalities but I did hear about people doing it and having more reactions than in normal POIS, making their POIS worse and reactions that lasted more than 3 months. So it is Russian roulette to do it really. This is NOT a whisper campaign.
POIS can be caused by different things.
We really need a good diagnostic tool to know which one is your case.

For the record: I really believe in allergy(like) theory, but we need to have the diagnostic tools to know if it applies to you. I hope the research will get us there.
Please don't let us be dependent of dr. Waldinger, who likes to keep things secret (and be the first one to publish) and doesn't answer critical questions of allergists.


Take care
All the best
Thanks Demo and Daveman for keeping the forum alive for so long!






Thanks Rock,

What really concerns me, especially if it IS allergy "like", or some other kind of auto-immune reaction but NOT desensitizable allergy, we may be preventing ourselves from benefiting from the REAL solution, just by doing desens. when it shouldn't be called for.

DESENS FOR POIS IS A FANTASY THAT WE ALL WANT TO BELIEVE. IT'S EASY TO BELIEVE. IS IT SAFE? WE BELIEVE SO!
WILL WE REGRET IT? WE DON'T CARE! UNTIL....


Sigh.....
Title: Re: Official Desensitization plan Begins!
Post by: demografx on July 12, 2013, 07:01:17 PM

Thanks Demo and Daveman for keeping the forum alive for so long!


You're more than welcome, Rocky! Thank you for your many forum contributions.
Title: Re: Official Desensitization plan Begins!
Post by: Stef on July 12, 2013, 07:38:51 PM
Re: Semen Desensitization Treatments --

When an allergist/immunologist administers desensitization treatments for allergies, the specific allergen has previosly been determined through skin prick and subcutaneous skin testing.

As an example, if there's a pollen allergy, skin-prick tests will show strong reactions ("wheals" that are a particular size) to very specific allergens (oak polllen, birch, grass, ragweed, etc).

With semen, no one knows yet what it is in the semen (if the problem is in the semen!) that anyone is reacting to -- the specific components of semen have not yet been identified as offending agents in POIS.

It's important to remember that an allergic reaction is not an autoimmune reaction. They are entirely different issues!

More than one immunologist has commented that there is a risk of actually inducing an autoimmune condition by SLIT or SCIT with one's own semen.

Daveman said it perfectly -- you are playing Russian roulette by trying to desensitize yourself with semen -- diluted or otherwise. 

If no one knows what the specific offending agent is in semen, then there can't be desensitization. It's illogical.  I do not mean to offend anyone -- it's the reality of desensitization treatments. They are used strictly for specific allergic conditions.  They are not used for autoimmune conditions.

For those of you who have not yet tried SLIT -- don't do it and try to be patient!  You are all so close to finding out what causes POIS. If semen contains an inflammatory agent that is somehow getting into your blood supply and causing POIS, you will learn about it via your research grant. And -- you'll learn if it's an allergic reaction or an autoimmune reaction.

My 28-y/o son is super intelligent (no, I really am not bragging -- he reads his biochemistry book at night to chill out -- with Sinatra playing in the background)  -- and is also extremely
open-minded and non-judgmental. He's a certified physician assistant, working in an urgent care center in So. Florida -- and has seen it all! You cannot imagine some of the medical problems he treats in So. Florida -- POIS does not hold a candle to this stuff! He see's patients with problems that you could not even begin to imagine. 

He's very sympathetic to POIS -- VERY SYMPATHETIC -- and he thinks that you are playing with fire with this desensitization.

Why risk inducing an autoimmune condition on top of POIS?

Please don't take offense from this post.  Try to hold on and be patient for a little while longer.

Stef

   



 




Title: Re: Official Desensitization plan Begins!
Post by: b_jim on July 13, 2013, 12:41:59 AM
Quote
More than one immunologist has commented that there is a risk of actually inducing an autoimmune condition by SLIT or SCIT with one's own semen
.

I can 100% confirm to you the contact of pure semen under the tongue or on direct contact with blood (on a wound) has absolutely no effects on my Pois. The "open door" of Pois is probably more specific.
I practiced SLIT during 1 month. Diluted or pure it has absolutely no effects, no more or less symptoms.





Title: Re: Official Desensitization plan Begins!
Post by: FloppyBanana on July 13, 2013, 04:49:33 AM
If no one knows what the specific offending agent is in semen, then there can't be desensitization. It's illogical.  I do not mean to offend anyone -- it's the reality of desensitization treatments. They are used strictly for specific allergic conditions.  They are not used for autoimmune conditions.

Nordnurse,
Waldinger has successfully done semen desensitisation on two people. I would be grateful for further clarity?
FB
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on July 13, 2013, 12:12:27 PM
If no one knows what the specific offending agent is in semen, then there can't be desensitization. It's illogical.  I do not mean to offend anyone -- it's the reality of desensitization treatments. They are used strictly for specific allergic conditions.  They are not used for autoimmune conditions.

Nordnurse,
Waldinger has successfully done semen desensitisation on two people. I would be grateful for further clarity?
FB

What does he call success?

Can those individuals talk about their success? Where are they?

Two of how many? Lots and lots of questions!

Title: Re: Official Desensitization plan Begins!
Post by: FloppyBanana on July 14, 2013, 07:54:24 AM
Daveman,

I presume you are referring to he as Waldinger, however the success of the treatment has been gauged by the individuals who had the treatment as documented in Waldingers study. They (the people who received treatment-2 people) said they did not want to halt the desensitisation because they felt they were making such positive progress. Of course you already know those people that have been treated Waldinger have been bound to secrecy as part of the study. I don't know why this would be.

Generally speaking I think that to wait for Nord to do a study (the one that will start this year) is a too narrow approach. There is a whole world of professional allergists/sexual health specialists etc out there and some of them are willing to engage with POISers. This is most likely to be on a 1-2-1 basis through POISers searching out medical professionals. Egordon on this forum is one of these people that has an allergist which is treating him and the effects looks to be life changing for him.

Anyone who engages in desensitisation is taking a risk whether it is in POIS research or by another allergist  (I'm not saying they are the same risks).

As for those who want to do desensitisation on themselves; this is a different group of people in my view and they are being irresponsible in their actions.
FB
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on July 15, 2013, 06:19:38 AM
Daveman,

I presume you are referring to he as Waldinger, however the success of the treatment has been gauged by the individuals who had the treatment as documented in Waldingers study. They (the people who received treatment-2 people) said they did not want to halt the desensitisation because they felt they were making such positive progress. Of course you already know those people that have been treated Waldinger have been bound to secrecy as part of the study. I don't know why this would be.

Strange don't you think? It is normal to have some secrecy during tests, so that there is no possibility for manipulation or competition. But "secrecy for life?" That is not normal
And a population of two (2), is not something you can call a raging success! We've had more success than that on several approaches right here on the forum.

Of course there have been many more than two tested,  although perhaps not officially. Haven't heard about many of them. Perhaps they let the successful ones speak out a bit more.

Generally speaking I think that to wait for Nord to do a study (the one that will start this year) is a too narrow approach. There is a whole world of professional allergists/sexual health specialists etc out there and some of them are willing to engage with POISers. This is most likely to be on a 1-2-1 basis through POISers searching out medical professionals. Egordon on this forum is one of these people that has an allergist which is treating him and the effects looks to be life changing for him.

Nobody knows what NORD will decide. If they decide to go for allergy theory, I would be happy to accept their choice, because I know they will have very carefully and professionally evaluated all of the options. If they believe it is allergy related, they will have good reason to believe this. It wouldn't surprise me that "auto-immune" (a cousin) gets a good shot. (Just a note, I don't have a clue who has applied nor what their approaches would be)

Anyways, you just can't let your personal judgement sway the lives of 800 members and who know how many more in the world. It's not a pissing contest!


Anyone who engages in desensitisation is taking a risk whether it is in POIS research or by another allergist  (I'm not saying they are the same risks).

There should be NO risk to humans in research. There shouldn't have to be.
If you want to take an approach to test and prove allergy theory, or any theory, there are many approaches that don't involve risk to humans.

Listen, if you are sure that it is an allergy, all the best to you.

Let's hope for your sake, that you are right, and that it won't complicate your life in the future.
Tremendous confidence in yourself and others.....


As for those who want to do desensitisation on themselves; this is a different group of people in my view and they are being irresponsible in their actions.
FB

Agreed.
Title: Re: Official Desensitization plan Begins!
Post by: Stef on July 15, 2013, 08:03:32 AM
If no one knows what the specific offending agent is in semen, then there can't be desensitization. It's illogical.  I do not mean to offend anyone -- it's the reality of desensitization treatments. They are used strictly for specific allergic conditions.  They are not used for autoimmune conditions.

Nordnurse,
Waldinger has successfully done semen desensitisation on two people. I would be grateful for further clarity?
 

FB,

The two "successes" that Dr. Waldinger reported are unproven -- there's no scientific documentation -- only subjective references to two men reporting improvement.  That is not scientific evidence.

Stef
Title: Re: Official Desensitization plan Begins!
Post by: demografx on July 15, 2013, 11:59:44 AM
Thank you, Stef.
Title: Re: Official Desensitization plan Begins!
Post by: demografx on July 15, 2013, 12:07:35 PM

[We]  just can't let [our] personal judgement sway the lives of 800 members and who know how many more in the world.

It's not a pissing contest!


Perfectly summarized, Daveman!
Title: Re: Official Desensitization plan Begins!
Post by: FloppyBanana on July 15, 2013, 04:01:22 PM

[We]  just can't let [our] personal judgement sway the lives of 800 members and who know how many more in the world.

It's not a pissing contest!


Perfectly summarized, Daveman!
Daveman or Demografx, I have no idea what this slang statement is referring to. Please can you clarify. Are you suggesting the line of this forum is primarily to support the nord approach to finding a solution? "Its not a pissing contest" What on earth is that meant to mean? Are there 800 members of this forum and do you think that one person, myself would be swaying them?
FB
Title: Re: Official Desensitization plan Begins!
Post by: Egordon on July 24, 2013, 12:08:56 AM
Re: Semen Desensitization Treatments --

When an allergist/immunologist administers desensitization treatments for allergies, the specific allergen has previosly been determined through skin prick and subcutaneous skin testing.

As an example, if there's a pollen allergy, skin-prick tests will show strong reactions ("wheals" that are a particular size) to very specific allergens (oak polllen, birch, grass, ragweed, etc).

With semen, no one knows yet what it is in the semen (if the problem is in the semen!) that anyone is reacting to -- the specific components of semen have not yet been identified as offending agents in POIS.

It's important to remember that an allergic reaction is not an autoimmune reaction. They are entirely different issues!

More than one immunologist has commented that there is a risk of actually inducing an autoimmune condition by SLIT or SCIT with one's own semen.

Daveman said it perfectly -- you are playing Russian roulette by trying to desensitize yourself with semen -- diluted or otherwise. 

If no one knows what the specific offending agent is in semen, then there can't be desensitization. It's illogical.  I do not mean to offend anyone -- it's the reality of desensitization treatments. They are used strictly for specific allergic conditions.  They are not used for autoimmune conditions.

For those of you who have not yet tried SLIT -- don't do it and try to be patient!  You are all so close to finding out what causes POIS. If semen contains an inflammatory agent that is somehow getting into your blood supply and causing POIS, you will learn about it via your research grant. And -- you'll learn if it's an allergic reaction or an autoimmune reaction.

My 28-y/o son is super intelligent (no, I really am not bragging -- he reads his biochemistry book at night to chill out -- with Sinatra playing in the background)  -- and is also extremely
open-minded and non-judgmental. He's a certified physician assistant, working in an urgent care center in So. Florida -- and has seen it all! You cannot imagine some of the medical problems he treats in So. Florida -- POIS does not hold a candle to this stuff! He see's patients with problems that you could not even begin to imagine. 

He's very sympathetic to POIS -- VERY SYMPATHETIC -- and he thinks that you are playing with fire with this desensitization.

Why risk inducing an autoimmune condition on top of POIS?

Please don't take offense from this post.  Try to hold on and be patient for a little while longer.

Stef


It's unclear why you've contended that you can't be desensitized to semen if the offending component isn't isolated. The treatments would still be exposing your immune system to the antigen, and slowly making it accustomed to that exposure. As a nurse ( -- which, and I don't mean any offense by this, is not a doctor --), one would think that you would have access to research papers and sources. And yet you've declined to cite a single source beyond your very intelligent teenaged son.

This seems to be the trend with desens naysayers. They're all adamant in their opinions, but not a single one of them can cite a single research paper, internet website, or doctor willing to speak on the record. And yet their opinions are somehow more credible than the medical professionals (SEASONED ALLERGISTS) that have been treating me over the past year. Please...

Folks, with each additional post it becomes more and more clear that despite the desens truthers' insistence that Waldinger and his related treatments are without proof*, they aren't interested in providing anything even moderately resembling proof themselves.  They're certainly no more credible than Waldinger or the many doctors that have begun to use his methods. And, as their lack of medical certifications suggests, on this particular issue they have significantly less credibility than the medical professionals currently working in the POIS space.


(* This is completely ridiculous, by the way. They quibble that the first piece of research ever fails to provide adequate proof that its method cures those treated by it because the statements of improvement are anecdotal. But surely they are aware that it is incredibly difficult to non-anecdotally demonstrate improvement when a disorder's symptoms are primarily cognitive!?!?! (Especially in a pioneering study))   
Title: Re: Official Desensitization plan Begins!
Post by: Egordon on July 24, 2013, 12:14:15 AM
If no one knows what the specific offending agent is in semen, then there can't be desensitization. It's illogical.  I do not mean to offend anyone -- it's the reality of desensitization treatments. They are used strictly for specific allergic conditions.  They are not used for autoimmune conditions.

Nordnurse,
Waldinger has successfully done semen desensitisation on two people. I would be grateful for further clarity?
FB

What does he call success?

Can those individuals talk about their success? Where are they?

Two of how many? Lots and lots of questions!



You know very well that there are several members of the forum that have undergone desens and are more than willing to talk about their success. I, for instance, have made myself available on several occasions. And while i don't have what you would consider scientific evidence of my improvement, I certainly have a sense of my recovery times before and after treatment. That recovery time was cut from three days to 6-8 hours. Six hours! If that's not improvement, I don't know what is.

And, again, where's your proof of anything that you've alleged over the past few months? I'll wait...
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on July 24, 2013, 06:16:44 AM
Re: Semen Desensitization Treatments --

When an allergist/immunologist administers desensitization treatments for allergies, the specific allergen has previosly been determined through skin prick and subcutaneous skin testing.

As an example, if there's a pollen allergy, skin-prick tests will show strong reactions ("wheals" that are a particular size) to very specific allergens (oak polllen, birch, grass, ragweed, etc).

With semen, no one knows yet what it is in the semen (if the problem is in the semen!) that anyone is reacting to -- the specific components of semen have not yet been identified as offending agents in POIS.

It's important to remember that an allergic reaction is not an autoimmune reaction. They are entirely different issues!

More than one immunologist has commented that there is a risk of actually inducing an autoimmune condition by SLIT or SCIT with one's own semen.

Daveman said it perfectly -- you are playing Russian roulette by trying to desensitize yourself with semen -- diluted or otherwise. 

If no one knows what the specific offending agent is in semen, then there can't be desensitization. It's illogical.  I do not mean to offend anyone -- it's the reality of desensitization treatments. They are used strictly for specific allergic conditions.  They are not used for autoimmune conditions.

For those of you who have not yet tried SLIT -- don't do it and try to be patient!  You are all so close to finding out what causes POIS. If semen contains an inflammatory agent that is somehow getting into your blood supply and causing POIS, you will learn about it via your research grant. And -- you'll learn if it's an allergic reaction or an autoimmune reaction.

My 28-y/o son is super intelligent (no, I really am not bragging -- he reads his biochemistry book at night to chill out -- with Sinatra playing in the background)  -- and is also extremely
open-minded and non-judgmental. He's a certified physician assistant, working in an urgent care center in So. Florida -- and has seen it all! You cannot imagine some of the medical problems he treats in So. Florida -- POIS does not hold a candle to this stuff! He see's patients with problems that you could not even begin to imagine. 

He's very sympathetic to POIS -- VERY SYMPATHETIC -- and he thinks that you are playing with fire with this desensitization.

Why risk inducing an autoimmune condition on top of POIS?

Please don't take offense from this post.  Try to hold on and be patient for a little while longer.

Stef


It's unclear why you've contended that you can't be desensitized to semen if the offending component isn't isolated. The treatments would still be exposing your immune system to the antigen, and slowly making it accustomed to that exposure. As a nurse ( -- which, and I don't mean any offense by this, is not a doctor --), one would think that you would have access to research papers and sources. And yet you've declined to cite a single source beyond your very intelligent teenaged son.

This seems to be the trend with desens naysayers. They're all adamant in their opinions, but not a single one of them can cite a single research paper, internet website, or doctor willing to speak on the record. And yet their opinions are somehow more credible than the medical professionals (SEASONED ALLERGISTS) that have been treating me over the past year. Please...

Folks, with each additional post it becomes more and more clear that despite the desens truthers' insistence that Waldinger and his related treatments are without proof*, they aren't interested in providing anything even moderately resembling proof themselves.  They're certainly no more credible than Waldinger or the many doctors that have begun to use his methods. And, as their lack of medical certifications suggests, on this particular issue they have significantly less credibility than the medical professionals currently working in the POIS space.


(* This is completely ridiculous, by the way. They quibble that the first piece of research ever fails to provide adequate proof that its method cures those treated by it because the statements of improvement are anecdotal. But surely they are aware that it is incredibly difficult to non-anecdotally demonstrate improvement when a disorder's symptoms are primarily cognitive!?!?! (Especially in a pioneering study))   

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 (as it is presently being treated at this moment). And we will no longer support this thread and will moderate very strictly conversations about desens. Find a siite that supports desens if you wish.

If or when desens may be seen as a viable for for POIS, it will be much more strongly controlled and directed. At such a time we may reevaluate our position.

NO MORE ABOUT DESENS.
Title: Re: Official Desensitization plan Begins!
Post by: Daveman on July 24, 2013, 02:31:58 PM
If no one knows what the specific offending agent is in semen, then there can't be desensitization. It's illogical.  I do not mean to offend anyone -- it's the reality of desensitization treatments. They are used strictly for specific allergic conditions.  They are not used for autoimmune conditions.

Nordnurse,
Waldinger has successfully done semen desensitisation on two people. I would be grateful for further clarity?
FB

What does he call success?

Can those individuals talk about their success? Where are they?

Two of how many? Lots and lots of questions!



You know very well that there are several members of the forum that have undergone desens and are more than willing to talk about their success. I, for instance, have made myself available on several occasions. And while i don't have what you would consider scientific evidence of my improvement, I certainly have a sense of my recovery times before and after treatment. That recovery time was cut from three days to 6-8 hours. Six hours! If that's not improvement, I don't know what is.

And, again, where's your proof of anything that you've alleged over the past few months? I'll wait...

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
Title: Re: Official Desensitization plan Begins!
Post by: Ccconfucius on July 25, 2013, 07:27:16 PM
If no one knows what the specific offending agent is in semen, then there can't be desensitization. It's illogical.  I do not mean to offend anyone -- it's the reality of desensitization treatments. They are used strictly for specific allergic conditions.  They are not used for autoimmune conditions.

Nordnurse,
Waldinger has successfully done semen desensitisation on two people. I would be grateful for further clarity?
FB

What does he call success?

Can those individuals talk about their success? Where are they?

Two of how many? Lots and lots of questions!



You know very well that there are several members of the forum that have undergone desens and are more than willing to talk about their success. I, for instance, have made myself available on several occasions. And while i don't have what you would consider scientific evidence of my improvement, I certainly have a sense of my recovery times before and after treatment. That recovery time was cut from three days to 6-8 hours. Six hours! If that's not improvement, I don't know what is.

And, again, where's your proof of anything that you've alleged over the past few months? I'll wait...

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


It is time for those of us doing dessensitization to check for semen/sperm antibodies.  This will give us data on the possible longterm effects of dessensitization.

Daveman you should not close than the dessensitization section. I see where you are coming and everyone thinking of doing of dessensitization should take into account  your points.
The section is not breaking any of the rules and it is also helping with reasearch.  Those who advocate of dessensitiztion are not pestering others to try dessensitiztion, they are just giving their experiences. I know when this forum started that is what was in the mind of those that switched. We wanted less restrictions on the experience we were sharing. No one doing dessensitization is advocating the dangerous act of doing dessensitization without professional help.  Dessensitization with all its faults still has more merit than most of the other methods used in this forum.  It has merit because there are four people that have claimed the method help them and it has some scientific backing ( a group of doctors with different backgrounds including a immunologist) eventhough the science might not be totally solid. I know there others that have tried it and it didnt work for them but for those people we dont know whether  the methods their doctors used is sufficient  and if they need to do dessensitization longer.   Like dr waldinger said the results from dessensitization are personal.  Most of the methods we have tried is from personal trials and have no scientific backing and we also dont know the longterms effects of those methods.
The results from trying dessensitization can be used by researchers to rule out dessensitization right away or look further into it before dismissing it.


With all that said, those of doing dessensitization should do an antibody test, if we have positive results then we should consider looking into advocating against dessensitzation.
Title: Re: Official Desensitization plan Begins!
Post by: FornicationDENIED on July 27, 2013, 03:53:58 PM
I know this may be somewhat offtopic but read this.
http://www.eurekalert.org/pub_releases/2013-07/jhm-jhr071813.php

Finally some light is shed regarding allergies, and possibly new effective treatments are on the way as long as big pharma can make money off it, good news for me since desensitization is not only unavailable to me (selfish closed minded doctors etc.) but is dangerous thanks to that damn Crohn's disease.
Title: Re: Official Desensitization plan Begins!
Post by: Egordon 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.
Title: Re: Official Desensitization plan Begins!
Post by: Egordon 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.
Title: Re: Official Desensitization plan Begins!
Post by: Daveman 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.
Title: Re: Official Desensitization plan Begins!
Post by: Daveman 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.

Title: Re: Official Desensitization plan Begins!
Post by: demografx 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.


Title: Re: Official Desensitization plan Begins!
Post by: FloppyBanana 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
Title: Re: Official Desensitization plan Begins!
Post by: Daveman 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!

Title: Re: Official Desensitization plan Begins!
Post by: Vincent M 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.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen 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.
Title: Re: Official Desensitization plan Begins!
Post by: fidalgo 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?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen 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.  :-[
Title: Re: Official Desensitization plan Begins!
Post by: fidalgo 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...
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen 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.
Title: Re: Official Desensitization plan Begins!
Post by: Egordon 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!

Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen 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.
Title: Re: Official Desensitization plan Begins!
Post by: ve-to on October 31, 2013, 01:06:30 PM
 Dr. Wendlinger desensitization is still running today? Why is he gone?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on November 11, 2013, 06:25:18 PM
Who is dr. Wendlinger? I don't know him.
Title: Re: Official Desensitization plan Begins!
Post by: b_jim on November 12, 2013, 02:34:45 AM
Quote
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!

Yes, I remember you wrote a good post about this to explain the difference between auto-allergic and auto-immune. Then if  you refind this post, maybe you could make a "stricky topic".
Title: Re: Official Desensitization plan Begins!
Post by: Egordon on November 20, 2013, 12:19:07 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.


Thanks for the tip Van! My doctor is now going to start giving me injections in both arms too; we'll see how it goes. We're also going to start using fresh semen, which we've avoided doing for almost 1.5 years.

I already feel great and am living life with pretty minimal symptoms, so hopefully these alterations will make things even better.
Title: Re: Official Desensitization plan Begins!
Post by: Egordon on February 25, 2014, 06:18:25 PM
Van,

Does your body have any more intense of a reaction to fresh semen? I'm at 1:1, receiving injections in both arms, and use of fresh samples has been a bit much for me to handle -- although it did seem to cause real improvement initially.

When increasing the amount or concentration of semen injected, i've often experienced POIS-like symptoms that have bled into the day after my injection. (I refer to these symptoms as POIS-like because they interfere with cognitive function but aren't accompanied by any of the pressure or sensations that I used to get  -- but have long since stopped getting -- from orgasm / pois. The cognitive dysfunction feels very intense and neurological though.) When I inject fresh semen (at the concentration as normal), however, these symptoms come on stronger and have lasted as long as 3 days. Although the fresher semen seems to cause a greater improvement, the decrease in quality of life was so great that I've decided to stop using fresh samples. I now keep the samples in my freezer for 3-4 days before going in for my shot, and have experienced a seismic improvement in how I feel day-to-day because of this. (Also this change to less fresh samples doesn't seem to have impacted the quality of my immunity much.)

Have you experienced anything similar?
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on March 11, 2014, 07:01:14 PM
I never had an injection with frozen semen. So I don't know the difference.

I also have injections in both arms. And with a bigger part of semen. We stopped increasing because my UTI problems. My doctor thinks that the desens makes the UTI worse.
Title: Re: Official Desensitization plan Begins!
Post by: demografx on March 11, 2014, 11:16:15 PM
Van, I'm glad that ur doctor is monitoring u.

Regards.
Title: Re: Official Desensitization plan Begins!
Post by: FloppyBanana on March 14, 2014, 05:52:05 PM
Hi Van,
What's UTI?
Thanks FloppyB
Title: Re: Official Desensitization plan Begins!
Post by: demografx on March 14, 2014, 10:37:49 PM
Urinary Tract Infection
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on March 15, 2014, 08:27:02 PM
Thanks Demo.

Floppy, in my case I have prostate infection
Title: Re: Official Desensitization plan Begins!
Post by: slugishdragonn on March 19, 2014, 04:16:19 PM
Even I seem to have Prostate Infection, and the UTI gets worse after ejaculation for a week.

@van
Do you feel light pain on erection/ stroking penis ? I do, but if I don't ejaculate for a couple of weeks, I don't have this pain for another 3-4 ejaculations.

I also feel pain in the lower back after ejaculation, the pain is although not acute, kinda sore lower back muscle.
In addition I suffer from PE.

How are you managing this ?

Thanks for any help or Ideas.


Slugishdragon
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on April 22, 2014, 01:47:55 PM
Yes I have these pains too.

I just found out that that one of the side effects of Xyzal (levocetirizine) is that it gets harder to urinate. The prostate becomes bigger after taking Xyzal. And in my case also after POIS. I used to use an extra dose of Xyzal when in POIS. I use almost everyday 1 pill. Now I want to stop.
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on July 07, 2016, 06:37:10 PM
Want to let you know that today I stopped with desens.  That's because of two reasons: 1. I had desens for 5 years. That's the normal period for desens. I could have gone on. But then the second reason: I will start with a purified CBD oil from Italy. The injections can have an effect on the oil.

I am stil at 70% less symptoms.
Title: Re: Official Desensitization plan Begins!
Post by: demografx on July 08, 2016, 02:23:00 PM
Thank you, Van, for reporting.
Title: Re: Official Desensitization plan Begins!
Post by: Liyyamurr on December 16, 2016, 09:21:25 PM
Hello, I'm just curious(Egordon/Vandemolen), how did you convince your doc or specialist to perform Densens? I was living in Savannah, GA and I brought Waldinger's papers to an allergy specialist. He said that he understood the protocol but due to ?ethical reasons" he could not perform the test on me in his practice. He referred me to two other allergist who said the same thing. So I'm at a dead end. Who are your doctor's? I would be willing to relicate. Thanks, Liyyam
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on November 07, 2017, 11:21:41 AM
My doctor worked with dr. Waldinger. So I didn’t have to convince him. Maybe Egordon can anser how he did it. But there are other ways now. With the knowlodge I have today I would take purified cbd oil instead. But that’s not available in every country. And not legal in many countries.
Hello, I'm just curious(Egordon/Vandemolen), how did you convince your doc or specialist to perform Densens? I was living in Savannah, GA and I brought Waldinger's papers to an allergy specialist. He said that he understood the protocol but due to ?ethical reasons" he could not perform the test on me in his practice. He referred me to two other allergist who said the same thing. So I'm at a dead end. Who are your doctor's? I would be willing to relicate. Thanks, Liyyam
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on November 18, 2017, 05:47:27 PM
Want to let you know that today I stopped with desens.  That's because of two reasons: 1. I had desens for 5 years. That's the normal period for desens. I could have gone on. But then the second reason: I will start with a purified CBD oil from Italy. The injections can have an effect on the oil.

I am stil at 70% less symptoms.
It’s been more than a year that I stopped with desens. I hoped that my prostate problems would be less after a few months without desens, but it only get worse. I don’t know if there is a connetion, but my prostate stays imflated even after 3 weeks of antiobiotics and abstince. My main problem now is not POIS but prostate infections.
Title: Re: Official Desensitization plan Begins!
Post by: Muon on November 18, 2017, 07:27:11 PM
I have gone through a 5 year long desensitization treatment at the same doctor as Vandemolen. This was quite beneficial for me, I don't recognize other symptoms aside from POIS getting worse from the treatment though (although my POTS symptoms got worse in the third year but stabilized 2 years after it while still in the treatment phase). Desenz is still the best thing against POIS for me personally.

Vandemolen, how do you know your prostate is infected? What test did you use? My second question: Did your prostate symptoms got worse while using the CBD oil?

Muon
Title: Re: Official Desensitization plan Begins!
Post by: Vandemolen on November 18, 2017, 09:05:21 PM
I have gone through a 5 year long desensitization treatment at the same doctor as Vandemolen. This was quite beneficial for me, I don't recognize other symptoms aside from POIS getting worse from the treatment though (although my POTS symptoms got worse in the third year but stabilized 2 years after it while still in the treatment phase). Desenz is still the best thing against POIS for me personally.

Vandemolen, how do you know your prostate is infected? What test did you use? My second question: Did your prostate symptoms got worse while using the CBD oil?

Muon
Yes desens was great for me too. 70% less POIS and only 1 day of POIS instead of 4.

Because of the purified cbd oil I had no POIS at all. But I only had this for a month. A few months later the purified cbd oil was availble again. But because I made a mistake and used too much cbd oil I got allergic for cbd oil.

I know my prostate is imflated because it’s a little bit swollen. And my esophagus, my throat and my nose gets dry. And I get overall malaise. My body gets cold and I have shivers.
Title: Re: Official Desensitization plan Begins!
Post by: uhtred sonof on June 06, 2018, 02:19:10 AM
For those of us without the option to see an allergist, might it possible to enact a kind of desensitization through a controlled schedule of O's? I'm thinking about how people go on elimination diets then slowly reintroduce problem foods with great results.

I also know it's common for POIS sufferers to experience little to no symptoms with an O following a long period of abstinence. These folks might have a strong allergic component to their POIS.

The dose of allergen is high with ejaculation, so perhaps a long period of initial abstinence is required. One could experiment with the length of time required for an asymptomatic O. Abstinence lengths could be reduced carefully, ever so slightly -  while exponentially more healthy O's are reintroduced over time.

Before I knew what POIS was, and when it was really bad, I believe I may have unwittingly done this with some success. I self-diagnosed POIS as a DeltaFosB/dopamine downregulation issue for which the treatment is coincidentally similar, but not good enough. Treating it like a desens protocol would require a lot more care and meticulousness.

But I did go from having guaranteed, full blown, life ruining POIS for 4-5 days, to now a manageable POIS of a few hours-days with a crude abstinence protocol and some methods I picked up from this site.



Title: Re: Official Desensitization plan Begins!
Post by: Nas on June 06, 2018, 02:44:44 AM
With my experience there is no such thing as asymptomatic POIS.
Light symptoms, yes, but you'll still feel the symptoms one way or another.
Title: Re: Official Desensitization plan Begins!
Post by: drop247 on March 06, 2020, 11:01:29 AM
Why not self desensitization using pre-cum instead of full orgasm? I've started a routine of watching pornography daily to the point of pre-cum leakage but not having full orgasm. The POIS symptoms are much milder with pre-cum than a full orgasm. I'm starting to wonder if nofap/noporn caused my POIS initially since for me when I started doing extended nofap that's when I started having problems with POIS. Though it could be coincidence.
Title: Re: Official Desensitization plan Begins!
Post by: Disaster on March 06, 2020, 05:32:02 PM
Why not self desensitization using pre-cum instead of full orgasm? I've started a routine of watching pornography daily to the point of pre-cum leakage but not having full orgasm. The POIS symptoms are much milder with pre-cum than a full orgasm. I'm starting to wonder if nofap/noporn caused my POIS initially since for me when I started doing extended nofap that's when I started having problems with POIS. Though it could be coincidence.

Waldinger abandoned the idea of POIS as an allergy so desensitizing does not work otherwise we would all be doing it.
Title: Re: Official Desensitization plan Begins!
Post by: demografx on March 06, 2020, 08:11:24 PM
I have serious reservations about the “45 POISers” supposedly studied.