Author Topic: Official Desensitization plan Begins!  (Read 149431 times)

LAPOISSE

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Re: Official Desensitization plan Begins!
« Reply #255 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 ?

Egordon

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Re: Official Desensitization plan Begins!
« Reply #256 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.)   

POIS since I was about 15. 1.75 years of desens and I'm now about 80% POIS free. Still working through best practices for maintaining my immunity and administering my injections with my doctor. Email me if you have tips or questions!

Vandemolen

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Re: Official Desensitization plan Begins!
« Reply #257 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.
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

Prancer

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Re: Official Desensitization plan Begins!
« Reply #258 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.
Symptoms (mostly cognitive): brain fog/difficulty thinking, lack of motivation, fatigue, trouble finding the right words, racing thoughts, possible OCD, anxiety, social withdrawal, extreme frustration and irritability, general discomfort.

Born in 1989, and symptoms since I was 14.

demografx

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Re: Official Desensitization plan Begins!
« Reply #259 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!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

jotape_chile

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Re: Official Desensitization plan Begins!
« Reply #260 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

Chris

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Re: Official Desensitization plan Begins!
« Reply #261 on: April 03, 2013, 10:01:19 AM »
If there is not even a slightly relief why continuing ?

Egordon

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Re: Official Desensitization plan Begins!
« Reply #262 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. 
POIS since I was about 15. 1.75 years of desens and I'm now about 80% POIS free. Still working through best practices for maintaining my immunity and administering my injections with my doctor. Email me if you have tips or questions!

b_jim

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Re: Official Desensitization plan Begins!
« Reply #263 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.
Taurine = Anti-Pois
Suffering from lyme disease

Vandemolen

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Re: Official Desensitization plan Begins!
« Reply #264 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!
« Last Edit: April 06, 2013, 07:45:52 PM by Vandemolen »
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

Vandemolen

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Re: Official Desensitization plan Begins!
« Reply #265 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!
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

b_jim

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Re: Official Desensitization plan Begins!
« Reply #266 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.

« Last Edit: April 13, 2013, 10:33:23 AM by b_jim »
Taurine = Anti-Pois
Suffering from lyme disease

Egordon

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Re: Official Desensitization plan Begins!
« Reply #267 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?
POIS since I was about 15. 1.75 years of desens and I'm now about 80% POIS free. Still working through best practices for maintaining my immunity and administering my injections with my doctor. Email me if you have tips or questions!

jotape_chile

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Re: Official Desensitization plan Begins!
« Reply #268 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

Stef

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Re: Official Desensitization plan Begins!
« Reply #269 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