Author Topic: Self SLIT Treatment  (Read 3505 times)

pois1

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Self SLIT Treatment
« on: February 07, 2013, 10:36:25 PM »
Who here has gone or is going through the SLIT treatment at home?  Do you have any tips?  I've started self treating at home.  I'm at around 1 in 250 but I got a sore throat for a few hours.  Should I back off until I get no symptoms?  How often should I increase the concentration and by how much?

Stef

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Re: Self SLIT Treatment
« Reply #1 on: February 07, 2013, 11:04:43 PM »
Who here has gone or is going through the SLIT treatment at home?  Do you have any tips?  I've started self treating at home.  I'm at around 1 in 250 but I got a sore throat for a few hours.  Should I back off until I get no symptoms?  How often should I increase the concentration and by how much?

POIS1,

Back off and don't do it!!! 

SLIT can be dangerous with POIS.

A very prominent researcher contacted the moderators here and strongly advised against it.  There's a concern that ANY desensitization treatments with semen can potentially induce an autoimmune condition that didn't exist in the first place.

It's not worth the risk, especially if you're not doing it under a physician's care. And -- it's not even been proven that POIS is an allergy -- which is the only reason that SLIT would be administered by a reputable physician

(FYI -- in the US, SLIT is not performed by reputable physicians -- so far, it's not an approved therapy for real allergies in the US.)

Others may disagree with me -- but that's my take on it.  Being 100% honest with youl

Don't do it.

Stef

demografx

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Re: Self SLIT Treatment
« Reply #2 on: February 08, 2013, 12:07:58 AM »
Thank you, Stef!
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

b_jim

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Re: Self SLIT Treatment
« Reply #3 on: February 08, 2013, 02:41:00 AM »
From my experience SLIT can't influence Pois reaction.
Taurine = Anti-Pois
Suffering from lyme disease

Vincent M

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Re: Self SLIT Treatment
« Reply #4 on: February 08, 2013, 02:41:50 PM »
    I did a lazy version of SLIT for 3 months with no results or reactions by just putting pure semen under my tongue for 5 mins directly after ejaculation.

    Willem got pretty good results with it and I think a couple others did as well.

Willem's SLIT Procedure
"PROCESS:
-   Collect fresh semen sample in small glass bowl and let sit at room temp until it completely liquifies (>1hr for me)
-   Wrap Al foil over top of glass bowl and freeze
-   Treatment schedule is variable.  Always do it at night so I can rest if it induces POIS.  Usually do treatments every other night.
-   Anti-histamines: I use anti-histamines to reduce reaction to O, but need to be off of them for 48hrs before treatment in order to gauge how my body is reacting.  I've been off of AHs for over a month now.
   For treatment, remove from freezer, chip off tiny piece (roughly 0.1mL) into another glass bowl, let thaw.  Immediately re-cover and refreeze main sample.
-   Fill 1L measuring cup with warm tap water
-   Using a 1mL needle-less syringe, draw the chipped-off/thawed sample from the bowl into the syringe.  
-   Squirt sample into measuring cup and make sure syringe is evacuated and double check that the semen sample dilutes well (no coagulation)
-   Stir, and while stirring, draw a small sample with a dropper
-   Clear all saliva from under tongue
-   Apply two drops under tongue
-   Let sit for at least 5 minutes (no swallowing)
-   Swallow.  No food or drink for 30 minutes (so as not to disturb the sore throat measurement)
-   The treatment usually gives me a sore throat.  If the sore throat goes away by 10AM (and no POIS etc.), I increase the concentration of the next treatment.  Otherwise I back off of the concentration a bit or keep the concentration constant.[/li][/list]

EQUIPMENT:
To get started all you need is a 1mL syringe (see picture below) and a 2L measuring cup with metric units on it.  Once you get into higher concentrations, you will need a graduated cylinder.  Both the 1mL and cylinder came with this dilution kit purchased online.  "

Some of Willem's progress with SLIT:

"Efficacy: Recovery time has gone from 7+ days to 1.5 days. Close to 100% reduction in brain fog. 60% reduction overall in muscle and nerve pain (especially feeling good after day 3). Much more energy, and a lot easier to wake up in the morning.

Description: Began routine at 1:40K in July '11, currently at 1:2.7 and will continue to 1:0.

Side Effects: Digestive issues, sore throat, sometimes full blown reaction (POIS). Treatment was rough early on.

SCHEDULE:
May 2011: Discovered that a tiny dab of semen applied under tongue induced mild POIS (numbed mouth, sore throat, induced joint soreness (not usual POIS symptom) etc.).
May 15th, 2011: Started with a daily treatment of 1:5,000, but induced a constant reaction.
Late May/June: Tried different concentrations, but determined that anti-histamines were masking my reaction. Dialed back to 1:50K and made sure was off anti-histamines for treatment.
July: Started at about 1:40K, by July 14th was down to 1:12,500 with sore throat clearing up before 7AM
July 17th: Tried 1:10K, sore throat lasted past 10AM, Tried again 7/18, sore throat gone by 9AM.
July 20th: 1:9K -> no sore throat at all. My body's response seems to be changing very quickly.
July 21st: 1:8K -> no reaction, 7/22: 1:7K -> no reaction, 7/24 1:6K -> no reaction, 7/25 1:5K -> sore throat until 7AM
July 27th: 1:4K -> sore throat until 8AM, 7/28: 1:3K -> Induced POIS (arghhh!!), 7/29: 1:3K -> no reaction, 8/1: 1:2K -> increased mucus, no topical reaction 8/3: 1:1,500 -> no topical reaction. Going back to 3X per week, not feeling well.
8/4 to 8/10: Out of town. 8/11 1:1,000, sore throat until 9AM. 8/13: 1:900, no reaction. 8/15: 1:800, no topical reaction, mild POIS the next day. 8/17: 1:1,000, no reaction. 8/19: 1:900, upset diges"
Taking ginger tea, no wheat, fenugreek+green tea/garlic, saw palmetto, niacin, boswellia, huperzine, B complex and nutmeg. See my treatment summary post for more info: http://poiscenter.com/forums/index.php?topic=81.msg3513#msg3513

pois1

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Re: Self SLIT Treatment
« Reply #5 on: February 10, 2013, 03:05:39 PM »
Stef, what researcher was that?

I disagree with you when you say that POIS has not been shown to be an allergy.  Dr. Waldinger's research has shown it to be an allergy.  In addition, I was tested for semen allergy at Creighton University School of Medicine by Dr. Bewtra (chair of the Allergy department) and it was definitively shown that I had an allergic reaction to my semen both with the skin prick test and the intradermal skin test.  I did not have an allergic reaction to saline or to some common allergens.  It would be more than reasonable to conclude that my symptoms are caused by this allergy, especially in light of the research that's been done.

It's true that SLIT is not common in the U.S., but it has been used in Europe for some time with success.  Hyposensitization has also been shown to be effective in the treatment of POIS in the Waldinger research.  I agree that no doctor would recommend self treatment with SLIT, but I'm tired of waiting/trying to find someone to help me.
« Last Edit: February 10, 2013, 03:08:08 PM by pois1 »

Daveman

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Re: Self SLIT Treatment
« Reply #6 on: February 10, 2013, 05:13:57 PM »
Stef, what researcher was that?

I disagree with you when you say that POIS has not been shown to be an allergy.  Dr. Waldinger's research has shown it to be an allergy.  In addition, I was tested for semen allergy at Creighton University School of Medicine by Dr. Bewtra (chair of the Allergy department) and it was definitively shown that I had an allergic reaction to my semen both with the skin prick test and the intradermal skin test.  I did not have an allergic reaction to saline or to some common allergens.  It would be more than reasonable to conclude that my symptoms are caused by this allergy, especially in light of the research that's been done.

It's true that SLIT is not common in the U.S., but it has been used in Europe for some time with success.  Hyposensitization has also been shown to be effective in the treatment of POIS in the Waldinger research.  I agree that no doctor would recommend self treatment with SLIT, but I'm tired of waiting/trying to find someone to help me.

Unfortunately, no one is sure if the skin-prick test for POIS is valid. It is believed that people without POIS can have a positive reaction to semen, so the skin prick test is not conclusive.
Ask Dr. Betra more specifically about this. It could be interesting to see clinical studies showing that non-POISers do not have positive reactions. Perhaps Dr. Bewtra can provide something there.

Dr. Waldinger did not do this test.

It's a fairly important test, because if one was NOT allergic before they start desensitization, they may start producing antibodies that they that they hadn't had otherwise.

Allergists who embark on desens programs must show that one is actually allergic before they start treatments. I don't know, perhaps Dr. Bewtra had other means of confirming the allergy.

Allergist know for instance that if certain  substances are injected intra-dermally at a given dilution and a reaction is obtained, that it means one is allergic, and that if one doesn't they they are not. They can't say that about semen. It is quite a different component, which when crossed the blood barrier can produce a reaction allergic or not.

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

Stef

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Re: Self SLIT Treatment
« Reply #7 on: February 11, 2013, 01:07:19 AM »
Stef, what researcher was that?

I disagree with you when you say that POIS has not been shown to be an allergy.  Dr. Waldinger's research has shown it to be an allergy.  In addition, I was tested for semen allergy at Creighton University School of Medicine by Dr. Bewtra (chair of the Allergy department) and it was definitively shown that I had an allergic reaction to my semen both with the skin prick test and the intradermal skin test.  I did not have an allergic reaction to saline or to some common allergens.  It would be more than reasonable to conclude that my symptoms are caused by this allergy, especially in light of the research that's been done.

It's true that SLIT is not common in the U.S., but it has been used in Europe for some time with success.  Hyposensitization has also been shown to be effective in the treatment of POIS in the Waldinger research.  I agree that no doctor would recommend self treatment with SLIT, but I'm tired of waiting/trying to find someone to help me.

Unfortunately, no one is sure if the skin-prick test for POIS is valid. It is believed that people without POIS can have a positive reaction to semen, so the skin prick test is not conclusive.
Ask Dr. Betra more specifically about this. It could be interesting to see clinical studies showing that non-POISers do not have positive reactions. Perhaps Dr. Bewtra can provide something there.

Dr. Waldinger did not do this test.

It's a fairly important test, because if one was NOT allergic before they start desensitization, they may start producing antibodies that they that they hadn't had otherwise.

Allergists who embark on desens programs must show that one is actually allergic before they start treatments. I don't know, perhaps Dr. Bewtra had other means of confirming the allergy.

Allergist know for instance that if certain  substances are injected intra-dermally at a given dilution and a reaction is obtained, that it means one is allergic, and that if one doesn't they they are not. They can't say that about semen. It is quite a different component, which when crossed the blood barrier can produce a reaction allergic or not.



Hi, Pois1 --

Dr. Waldinger's study did not show that POIS is an allergic condition. He hypothesized that it is, but did not prove it.  

I'm not trying to cast aspersions on Dr. Waldinger! He put POIS on the medical map -- and probably did so with almost no financial resources to carry out a solid study -- and for that effort alone he deserves praise and gratitude!!!! But his study was very far from conclusive -- of anything!

From Dr. Waldinger's 2011 study --

"Although the current study supports our hypothesis of an immunogenic reactivity against autologous semen, the current study contains an important limitation due to the current preliminary observational design. One of the main questions that still needs answering is whether clinical and immunogenic responses post-ejaculation are different in two intentionally recruited groups, e.g., individuals with POIS criteria vs. a control group.
 
In other words, the current study does not provide data on sensitivity and specificity of skinprick testing in POIS. Another intriguing question is whether hyperreactivity against autologous semen is confined to POIS or to a common phenomenon in the general population."


Those are basically a lot of words that say he and his team don't know if men without POIS get that same skin test reaction -- it was very honest of him to admit that.

Additionally, if someone has an allergy that brings on  symptoms as severe as those of POIS -- there are blood biomarkers that should be very evident.  He didn't look at those biomarkers -- he barely mentioned IgE, for example (I'm not even sure if he measured this in his POIS study patients).

Even if POIS is an allergy, one would need to know what part of the semen the person is allergic to.  It's like saying someone has mold allergies. They can't be desensitized to all molds -- and wouldn't need to be.  The specific molds need to be identified in order to do proper desensitization treatments.  

Remember, semen contains A LOT of individual substances -- the question would be which component of the semen is a person allergic to?

Dr. Waldinger's main area of expertise and interest is in premature ejaculation (PE), and he noted that both of the "success" stories -- men who had both PE and POIS -- improved after desensitization treatments.  It's so unfortunate that those two men have not come to this forum to share their experience.

I agree with Daveman -- ask Dr. Bewtra if it's known yet if men without POIS get those same type of skin reactions. Dr. Bewtra is an absolutely fantastic, top notch allergist and immunologist, with ethics and knowledge that are beyond reproach!  (I'm hoping he applies for the POIS grant.)

Pois1 -- I don't want you to feel that I'm arguing with you here, because I don't mean to be doing that.  It's just that there really isn't solid research on POIS. No one knows exactly what happens to cause that cascade of horrible symptoms.  And I bet that Dr. Waldinger would agree with this.

(As an aside, he is not an allergist.)

SLIT is done with success in Europe for standard allergies -- you're definitely correct.  I asked an allergist here in the US (one whose specialty is anaphylaxis!) why SLIT isn't done in this country.  His reply was that the FDA hasn't approved strong-enough dosages of allergens for SLIT usage.  We were just getting off of a plane, heading to a pediatrics meeting (he was one of the expert lecturers at the meeting) and I lost my chance to ask "why" the FDA hasn't approved this.  He mentioned something about safety, but in the hustle and bustle of getting off the plane, the conversation ended.

Anyone doing SLIT therapy on his own is playing with fire, and can end up doing serious damage to himself.  I strongly feel that it is not worth the risk.

Stef
 









« Last Edit: February 11, 2013, 08:13:04 AM by nordnurse »

Egordon

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Re: Self SLIT Treatment
« Reply #8 on: February 11, 2013, 07:42:44 PM »
I'm pretty sure that anyone that's been following this board for more than a few months knows very well that most people don't have the same kind of reaction to semen that POISers do. Why am I so confident about this? Because many of the members of this board (individuals who actually have POIS) have gone to allergists in hopes of receiving treatment but been denied said treatment because they didn't test positive. (Which is a huge problem, by the way!) That, it seems to me, is a pretty strong indication that average people's skin isn't especially sensitive to semen. Especially considering the fact that many of us that received positive tests experienced quarter-sized welts and stinging arm pain that lasted for several minutes.

I'm not saying we shouldn't do the tests. We should, obviously -- the Downside risks of being wrong are too significant to not do them. But anyone that's actually received professionally administered desensitization treatments knows VERY WELL how the tests are going to come out. I'd be happy to bet anyone their lifesavings that POIS is an allergy. My improvements and reactions are otherwise unexplainable.
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!