Desensitization, Fact or Fiction?

[Daveman]

I found this comment interesting when I was eating about vasectomy:

"Because sperm contain only half the chromosomes of the body?s cells the immune system thinks they are foreign invaders and quickly walls them off, creating a firm nodule of tissue at the end of the vas."

https://onemoresoul.com/news-commentary/vasectomy-safe-and-simple.html

The article quite anti-vasetcomy.
FB

My opinion is that my POIS is a result of a long term vasectomy (20+ years) followed by a reversal. My POIS came
about 5 yrs after the reversal.

My urologist told me that a large percent of individuals with vasectomies have antibodies to sperm.
Generally, vasectomies are considered safe, because there is still a blood barrier. The antibodies do enter the bloodstream,
but sperm does not.

IF sperm enters the bloodstream, there is a BIG problem. However, this is not normally the case.

The urologist however indicated that longer term vasectomies really mess up the very fine tissues within the testicles. Sperm are attacked
by the antibodies. So he said that most reversals, especially with time, are not successful because the sperm are attacked and destroyed
before the can "be used".

Eventually, damage can be enough, especially if a reversal is done, and other tissues are exposed to the auto-immune battle. Injuries can be
caused which eventually expose the sperm to the bloodstream.

This is not far off of what Dr. Waldinger has said, BUT is in no way and allergy! It is auto-immune. THE TREATMENTS ARE ENTIRELY DIFFERENT.
AND worse, desens may even create a similar problem that might not have originally existed. If for instance POIS were something else all together.

[poiseidon]

i don't know how to take this but i found it typing sperm and bloodstream on g.

it's about a guy injecting his own semen for no apparent reason experimenting some symptoms that seem to be assimilated to pois.

www.ehelp.com/questions/10437550/what-is-the-long-term-effect-of-injecting-my-own-sperm-into-my-blood-sream
 
i have injected 20 cc of my own sperm into my arm (blood stream) while it was still white and warm (I have done this 3 or 4 times). What will this do to me long term. The first time I did this it was a real head rush, and I felt I was going to pass out. Somehow, I had a strange taste in my mouth. I noticed the last time I must have shot more than 20 cc and I got really cold, and had to take a hot shower to get through it. I felt weak and was not able to walk striaght, felt really sick, and was shivering. Extra question, does sperm have stem cells, that can rebiuld brain cells??

[poiseidon]

i mean this guy is clearly an idiot. but given he's saying the truth, it confirms my feeling that the answer has to be related to some sort of leak in the bloodstream. the bigger the worse.

[Egordon]

It's funny, the one thing i've learned from this site is how little we know about the disorder and how foolish it is to be dismissive of ideas regarding it.

Initially, people were very dismissive of people who suggested there was some link between POIS and excessive masturbation. Now, it seems entirely plausible (even to the most skeptical) that such activity could cause harm to the vessels carrying semen, and would cause semen to leak across the barrier -- resulting in the formation of anti-semen antibodies.

Also, people currently seem convinced (by what, i don't know) that trained immunologists are undertaking the incorrect treatment when administering injections to decrease immune response -- notwithstanding some evidence (including first-hand knowledge on the part of several members) that such treatment is incredibly effective.

I do wonder how we will look back upon many of our ironclad theories in 5-10 years.

[Daveman]

Also, people currently seem convinced (by what, i don't know) that trained immunologists are undertaking the incorrect treatment when administering injections to decrease immune response -- notwithstanding some evidence (including first-hand knowledge on the part of several members) that such treatment is incredibly effective.

Trained immunologists ALWAYS test for positive reactions to an allergen before desensitizing to it. Why? Just to avoid over-sensitization? NO
They don't want to expose your system to something that doesn't presently cause allergies, potentially creating a problem that didn't originally exist.

That can't be done with POIS. There isn't a developed and proven procedure for testing semen allergy.

There are tests that can detect allergic reactions perhaps (aside from the whelt that the injections leave), but these are not double blind tested.
Will a non-poiser show a positive reaction? It isn't pollen. It's a foreign body that shouldn't be in the bloodstream.

Perhaps the trained immunologists are taking "the doctors' " word for it.

I'm not taking the risk.

One of our members may have suffered irreversible damage from excessive B6 intake. That was a risk that was known. At the time he took the B6 he thought it was
worth the risk. Now, he's thinking differently.

I'm not going to do desens until research proves it's effective and safe.

As I said. You and I can both say we have our cures. Doesn't mean they work for everyone, and the risks should be taken seriously.

[Egordon]

Perhaps the trained immunologists are taking "the doctors' " word for it.

I'm not taking the risk.

I'm not going to do desens until research proves it's effective and safe.

My doctors certainly are not, as i've made sure to ask them about the potential risks. But you absolutely have the option of waiting-it-out; i've never tried to keep you from doing so. I hope that such research emerges in our lifetimes (-- although, given the pace of POIS research, i'm certainly not holding my breath).

My problem isn't with the decision to refuse consultations with physicians and wait for "definitive" research. It's with the fact that the decision to wait has been construed as the only sensible one -- even for members whose symptoms are so severe that they are incapable of pursuing a career capable of generating a sustainable income.  

There's no evidence that desens is harmful. So telling someone whose life (and potential happiness) is currently crippled by POIS doesn't seem an especially sensible decision to me.

One of our members may have suffered irreversible damage from excessive B6 intake. That was a risk that was known. At the time he took the B6 he thought it was
worth the risk. Now, he's thinking differently.

Clearly you realize that this situation is not analogous to a treatment undertaken by physicians who have specialized in this field.

[Daveman]

One of our members may have suffered irreversible damage from excessive B6 intake. That was a risk that was known. At the time he took the B6 he thought it was
worth the risk. Now, he's thinking differently.

Clearly you realize that this situation is not analogous to a treatment undertaken by physicians who have specialized in this field.

Whether its analogous or not, I hesitate to say... but it is certainly pertinent.

Especially in light of this conversation:

It's with the fact that the decision to wait has been construed as the only sensible one -- even for members whose symptoms are so severe that they are incapable of pursuing a career capable of generating a sustainable income.

You make it sound as though I WANT people to suffer! You clearly don't understand the potential risks involved. Even though they may be 1 in 1000, we could even say 1 in 200, so little testing has been done and over such a short period of time.

It is preferable in my opinion that we wait "just a little longer", and believe me I understand what POIS is and how awful it feels, than to potentially expose someone to an irreversible nightmare later.

Not to mention that for several who have undergone desens treatments with trained professionals, it has meant just about non-stop POIS for more than a year.

I know that someone who is suffering POIS will want to do anything that he thinks will give him a chance to be rid of POIS. They say, "I don't care what the risks are"... until
they end up being one of the ones who suffers irreversible damage.

Maybe he should try niacin or viagra first. I can say, that it has rid me of my POIS. Wouldn't it be better to try something like that, which doesn't take a year and a half of suffering to find out if it really works for him? Try it for 4 weeks, making sure that the procedures are properly applied, and then if that doesn't work, we should know who and what the research program will be.

What if we are surprised by the program? And there could be ANY number of surprises to come.

[Going less Crazy]

Just putting in my 2 cents.  For me, this "desensitization to sperm" idea just lacks a lot of backing.  Yesterday, I almost "O'd" (felt a "tiny bit" of orgasm), but did not have any sperm ejaculate, but had POIS because of it.  This tells me it is something released in your brain, or by your body that goes to your brain, that causes POIS.  Again, by POIS I mean my POIS because you all are different.  But it just doesn't make any sense to me to feel this way because of the sperm I've had most of my life that I never had an allergy to for the most part.  I feel like my POIS started possibly by the release/development of an antibody, or something in my brain and whenever I have an orgasm, it is attacked by this specific antibody.  I really don't believe POIS, as in my POIS, is caused directly by sperm.  Ok GLC shut up and wait for the research.

[demografx]

Thanks, GLC!  

You make a lot of sense.

[Andy451]

I have done Desense. I can be harmful. I had to see for myself what was what.

It wkd toward the middle, to an extent.. and then made things more severe beyond 1/1000 dilution. I went all the way down to 1/600 which felt like a severe POIS episode and then stopped...

More than anything I gained a piece of mind knowing that I was not harming my body with my mind or sex. It was my body attacking itself by whatever means POIS actually does manifest. My arm would swell up in the localized area of the shots in the Drs. office. I would have something that looked akin to a bee-sting. I believe there is an immunological component here, but the why or the how I think is not necessarily answered by shooting semen into our arms.

I would not recommend doing this treatment until more research is done on everything POIS. If you do it just to see that it is not you at lower dilutions you will probably not hurt yourself (1/80k)..

Let's stick with the current research for now; and if it doesn't pan out we can hypothesize some more. But this one needs more solid evidence and research to prove as a viable option. Immunology can be voodoo in the med-science world sometimes w/ unknown dependent and independent variables.

The more guys we find w/ POIS the better we can test all hypothesis. Get the word out there. I tell family and friends now- because they must know the hell that this is, and that it is real...

[Going less Crazy]

I find it difficult to believe that the POIS I experience is due to sperm mainly because of my main reaction in my brain where you feel orgasm.  How can sperm cause an allergy-type reaction there?  Is your POIS similar Andy? I have no physical symptoms.  Maybe there is more type of POIS's, those with mainly physical reacting to sperm and those with cognitive reacting to a hormone but only god knows.

I also would still like to know if normal men were injected with their own semen would they "swell" up and have a reaction.

I may try my own skin prick test soon.

[FloppyBanana]

Hi Andy451,

Did you test positive for semen allergy skin prick test?
FloppyB

[Quantum]

I think in his latest review article, Dr Waldinger somehow puts the desense idea on the backburner - see my opinion at http://poiscenter.com/forums/index.php?topic=2346.msg19538#msg19538 ( you will also find in this thread the link to this August 2016 Waldinger article)

[Liyyamurr]

Anyone know of Allergists willing to do desensitization in Georgia, Florida, Colorado, or Texas? If not, where do you guys do desens at?

[Quantum]

Anyone know of Allergists willing to do desensitization in Georgia, Florida, Colorado, or Texas? If not, where do you guys do desens at?

Hi Liyyamurr and welcome to the forum,

POIS is not a syndrome that allergists or any other specialist or physician know about.  It is a rare syndorme, and only a handful of researchers know about POIS.  So, obviously, desensitization with your own semen is something no doctor will know about, and if you want to discuss this with ANY doctor, I strongly suggest you bring along a copy of the scientific paper written by Dr Waldinger on desens.  Otherwise, chances are the doctor will think you are out of your mind, and will refer you to a psychiatrist

As I have mentioned above in this thread, Dr Waldinger himself, who is in Netherlands,  seems to have stopped using desensitization, citing it was too time consuming, and not covered by insurance companies.

Not many members have tried desensitization, let alone showing good results with this technique.  To my knowledge, one member has reported 75% relief after 3 years, which is not very convincing, and it is maybe part of the reason Dr Waldinger has now turned his focus elsewhere. So I am not aware of any physician doing this on this side of the ocean. 

Maybe some other members know more about this.

The current research going on in New Jersey, by Dr Komisaruk, founded by this very forum, is testing a treatment based on vagus nerve stimulation.  Results will be out next year.  Desensitization, for now, seems to be on a downward slope.

[FloppyBanana]

Hi Quantum,

Where did you get the information saying the results of the Dr K's research will be out next year?

Thanks - FB

[Quantum]

Hi FB,

It is just my guess based on the study ongoing calendar, and the delays in each part of the study so far.

Somewhere between now and the end of the year, the experimental part of the study will be over ( that is, the tests and measurements with POIS sufferers participating in the study.)  After that will begin the review of the data, the discussion of these data and what can be learned from the results of the study, and the writing of the paper itself.  When this final paper will finally be to their liking, it will be pair reviewed ( probably in this case by a NORD committee?  I don't know about all the details).  When everything will be fine with the final paper, it will be submitted to a scientific journal for publication, and eventually, accepted for publication.  It is hard to know exactly at this time when it will be published, but it should be somewhere in 2017.  It depends on the speed at which each step will be completed:  redaction, revision, acceptation for publication, and any other step I do not know about because I do not work in the research field.   It is hard to tell when the publication itself will happen. Early 2017?  Spring 2017?  Later?  I have no idea, but I do hope it would be in the first months of 2017.

The 4th - and last, I think - interim report will be out maybe in a month or so.  From there, I would be very surprised that all the other steps would be completed in the 10 weeks or so before the holiday break, that is why I expect the results for 2017. 

Sorry if this come as a disappointment for any member, but in the other hand, I am not sure that many are surprised, considering the slow pace for each step of the study, so far.

But I am sure it will have worth the wait.  Valuable knowledge on POIS and its treatment will be detailed in the final paper.  Furthermore, whatever the results, this study will put POIS on the map of medical research, and attract more attention to it, and make more POIS data available in scientific articles for other researchers.  Do not forget that this paper will contain, among other things, the data obtained from the members of this forum through the survey done here last summer ( June and July 2015) by the Rutgers team.  I do not know exactly how many members have answered this extensive survey, but it will be for sure the largest set of data, obtained from the largest number of POIS sufferers, ever to be published so far. 

And this all have been made possible by this forum, so thanks to the poiscenter forums founders !!! 

[certainlypois2]

I dont know if anyone posted this article  before. I googled Post orgasmic illness syndrome  and google's top results were scholarly articles. I Looked through those articles and found dr berstein and his colleagues did semen allergy test on healthy men to see if they react. In addition he tested to see if reaction is caused by ige or pgs.  The link is not a full article so i am not 100% about the results.
http://search.proquest.com/openview/6dae699607307350ab0dd29cd0332bfe/1?pq-origsite=gscholar&cbl=2031058

[demografx]

Thanks, CP2!!

[FloppyBanana]

It would good if someone could get the full article...

FB