Post Orgasmic Illness Syndrome (POIS)

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Offline observercenter

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16750 on: 10/06/2012 13:14:42 »

- pollen / hay fever  -- YES, but a mild one
- respiratory condition such as asthma -- YES, had an asthma attack when i was a child
- sinusitis -- YES
- food allergy -- kiwifruit
- medication allergy -- Maybe...
- animal hair allergy -- YES!
- dust allergy -- Definitely: YES!(I think it is the worse)
- insect bite / sting allergy -- NO
- mould allergy -- NO
- dermatitis or adult acne. -- YES, when i was a child.

Also mention if you have digestive discomfort or a diagnosed condition such as IBS.
NO.

It would be good to know when did the allergy start?
From the very first moment i could remember. I have POIS since i was -18- years old.
« Last Edit: 10/06/2012 13:19:21 by observercenter »

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Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16751 on: 10/06/2012 13:44:36 »
Thanks observercentre. I'll add my details.

- pollen / hay fever
No.

- respiratory condition such as asthma
Yes, asthma.

- sinusitis
Yes.

- food allergy
Yes, gluten.

- medication allergy
no.
 
- animal hair allergy
not obvious.

- dust allergy
no.

- insect bite / sting allergy
no.

- mould allergy
Yes.

- dermatitis or adult acne.
Yes.

Also mention if you have digestive discomfort or a diagnosed condition such as IBS.
Yes.

It would be good to know when did the allergy start?

No obvious allergies until 15 years old. Allergies and POIS since.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16752 on: 10/06/2012 19:48:18 »
Itís often mentioned that Niacin doesnít work for everyone, and it could well be, BUT I have worked recently with at least 3 people on a one to one basis to help with the use of niacin, and it is a VERY precise process. If itís not done JUST RIGHT, it doesnít work. So Iím certain that many who have tried it and failed have just not applied the ďrulesĒ correctly and given up too soon.

Itís really worth trying to make it work, because when it works itís amazing. I suggest that if you are one of those for which it hasnít worked, that you get in contact with one of us on a one on one to try to see if you canít make it work. I havenít spoken to any of the others yet about this, but Iím sure ObserverCenter for instance would be glad to help out.

If you are one for which it works, perhaps you can volunteer here to receive PMs to help guide someone through. They are just simple things that one might miss or ďdo wrongĒ, but they make all the difference in the world.

It would be a shame to be suffering when it isnít necessary.

Besides, if it is just a procedural thing, then we can move one step closer to understanding the mechanisms. If itís just procedural but we think itís a non-compatibility, then we understand the mechanism improperly. We misunderstand the reason for it not working in some.
Yeah, you are right Dave. The procedure should be followed VERY precisely, otherwise it won't work. This was the reason I thought that Niacin injection doesn't help me, when I have tried it very first time. But it helped me when I attempted to try it second time, in a month, because of despair. Also body needs to adapt to Niacin, very first intakes results in discomfort feelings in various areas, like area of stomach, heart or head.

I think there is also a possibility that tablets won't work for some, because of insufficient digestion. Flush effect is a good marker to determine whether Niacin digested good or not so good.

Anyone please feel free to send me a PM if you want a one to one guidance and support in trying Niacin.

Victor
You can purchase injectable nicotinic acid with a doctors prescription from any compounding pharmacy in the united states.  I had my doctor write an order for 100mg/1ml concentration.  If injected into the correct subcutaneous site, I have had a flush in less than 2 minutes. 

LAURACOSTIS IS A MEDICAL PROFESSIONAL. VICTOR IS VERY EXPERIENCED. PLEASE DO NOT ATTEMPT INJECTING YOURSELF WITHOUT PROFESSIONAL MEDICAL HELP OR YOU CAN CAUSE PERMANENT INJURY TO YOURSELF!
« Last Edit: 11/06/2012 04:40:51 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16753 on: 10/06/2012 21:27:34 »
THANK YOU, EDS!

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Offline Lapanique

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16754 on: 10/06/2012 23:20:56 »

What you're describing could be an allergy. 
There have been many posts about people suffering allergy-like symptoms. Sometimes these are described as flu-like symptoms but it can be very difficult to distinguish between fatigue, runny nose and streaming eyes caused by flu and an allergy. Indeed, if the immune system is weakened and you come in contact with the flu virus, you might develop a flu.

I think there were some questions in the survey about allergies but it might be work a recap. It would be useful if posters could say whether they have experienced allergy symptoms in the past and whether they fit into the following categories?

- pollen / hay fever
- respiratory condition such as asthma
- sinusitis
- food allergy
- medication allergy
- animal hair allergy
- dust allergy
- insect bite / sting allergy
- mould allergy
- dermatitis or adult acne.

Also mention if you have digestive discomfort or a diagnosed condition such as IBS.

It would be good to know when did the allergy start?

No to all the categories EXCEPT the last one.  The first time I had an O at 11 I developed dermographism.  Have had it since.  That is definitely an allergic reaction.  I've been taking claritin for 20 years to reduce the itching.

I also developed some serious digestive issues.  About 3 times a year i will have a very painful stomach ache and pass out for a minute or two, with profuse sweating.  Feels like death.  Never had these issues before I ever had an O. 

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16755 on: 10/06/2012 23:54:47 »
My POIS also arrived with dermatitis and horribly-feeling "dry" fingertips. For 4 long days with each incident of POIS.
« Last Edit: 10/06/2012 23:56:44 by demografx »

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Offline Habibou

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16756 on: 11/06/2012 10:22:33 »
- pollen / hay fever : NO
- respiratory condition such as asthma : NO
- sinusitis : NO
- food allergy : Lactose en casein intolerance
- medication allergy : dont know yet
- animal hair allergy : NO
- dust allergy : YES
- insect bite / sting allergy : NO
- mould allergy : NO
- dermatitis or adult acne.: less and less

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Offline 0002ppdnuos

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16757 on: 11/06/2012 15:25:02 »
Found it, thanks.
250 mg Vitamin B1 (thiamine hydrochloride)
250 mg Vitamin B6 (pyridoxine hydrochloride)
0.5 mg vitamin B12 (hydroxocobalamin)
That's a big dose. Many 1000% above RDA I think.
Exactly.
That's why I dare not try yet.
I'm afraid I'll be dead being poisoned before my POIS is cured.
So, I'm trying brewer's yeast, which has lots of vitamin B and protein.
One quarter teaspoon daily mixed into my coffee.
I'll see how it goes.

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Offline 0002ppdnuos

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16758 on: 11/06/2012 15:28:37 »
- pollen / hay fever : NO
- respiratory condition such as asthma : NO
- sinusitis : NO
- food allergy : YES (honey)
- medication allergy : Yes (a kind of antibiotic)
- animal hair allergy : NO
- dust allergy : NO
- insect bite / sting allergy : YES (mosquitoes & ant's bite)
- mould allergy : NO
- dermatitis or adult acne.: NO

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Offline Omen 30

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16759 on: 11/06/2012 17:30:18 »
I have a history of eczema...

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16760 on: 12/06/2012 00:16:15 »
Habibou, excellent idea about a case history.

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Offline B_Daniel

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16761 on: 12/06/2012 06:47:47 »
How many of you have had b12 levels measured? Anyone of you had b12 shots? 

See an extract below related to b12 where this person mentions the relationship between sperm and b12

"All sorts of theories get made up when real facts are lacking. The right vitamins make all the difference in the world. If a teaspoon of semen contains as much b12 as a steak it might seem rather magical revitalizing in effect, a powerful sacrement, in a society literally starving for b12."


Thanks for reposting your note. I think we miss important posts all the time so re-posting something that we overlooked and that you found important is very welcomed. To answer your question, I've never had my B12 levels tested, but could prob attach that to my nxt bloodwork pretty easily.  Does a B12 deficiency cause brainfog like we all have in common?  Because I didnt find that in a quick search i did on B12 deficiencies.  Perhaps that's my difficulty in getting on board with this theory. 
2-5 days, 80% cognitive, tongue-tied, brain fog, lose track of thoughts mid conversation, anxiety, dry eyes, irritable, fatigue.  Believer of both auto-immune AND regeneration theories.  My sessions are much shorter when I've gone 2 wks without.

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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16762 on: 12/06/2012 18:59:03 »
Kurtosis or anyone with a good understanding of how niacin might be working. There are those members who find tha niacin doesnít work, and some who have tried initially and it didnít work, but after coming back and giving it another go, found that if itís done just right, it DOES work.

However there are still those who have troubles. Iím confused by one person who, on his first try, found that it workedÖ first time in his life relatively POIS free. But since hasnít been able to duplicate the success. Seems to be following all of the rules. And even duplicating the effort that worked!

1)   if it worked once, it would have to work again right?
2)   Perhaps state of health is an influence, this person is fit and healthy, but seems to require upwards of 500mg to get a flush after several hours of fasting.
3)   I wonder if it could be a matter of zeroing in on one of the other B vitamins instead of niacin?
Any suggestions. Since this is a difficult case, it might give insight into resolving the problem for those who find success with niacin difficult, and therefore getting closer to a real solution for all.
How does Murphey do it??

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Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16763 on: 12/06/2012 21:12:12 »
How many of you have had b12 levels measured? Anyone of you had b12 shots? 

See an extract below related to b12 where this person mentions the relationship between sperm and b12

"All sorts of theories get made up when real facts are lacking. The right vitamins make all the difference in the world. If a teaspoon of semen contains as much b12 as a steak it might seem rather magical revitalizing in effect, a powerful sacrement, in a society literally starving for b12."


Thanks for reposting your note. I think we miss important posts all the time so re-posting something that we overlooked and that you found important is very welcomed. To answer your question, I've never had my B12 levels tested, but could prob attach that to my nxt bloodwork pretty easily.  Does a B12 deficiency cause brainfog like we all have in common?  Because I didnt find that in a quick search i did on B12 deficiencies.  Perhaps that's my difficulty in getting on board with this theory. 
It doesn't always show up. There are a few reasons for this. b12 can be stored so it can take years before symptoms start to appear. There's also the usual problem that you can appear to be within the acceptable range but have impaired absorption of b12 so you're becoming steadily worse, eventually leading to pernicious anemia. As they point out in http://www.aafp.org/afp/2003/0301/p979.html
the number of people who respond to treatment with b12 injections or sublingual supplementation appears to be double those that present with low levels. When I say "respond" I don't mean some kind of vague feeling of wellbeing but also a measurable reduction in homocysteine levels. The conclusion is that the simple serum b12 tests don't necessarily identify the problem.

I've had 2 relatives develop pernicious anemia and, in both cases, their doctors thought they were fine right up until the point where their b12 levels dropped substantially. The relatives knew something was up so the cognitive symptoms seem to be a leading indicator of the reduced b12 serum levels. I've often suspected that this is a problem in PA and other b vitamin deficiencies as the body can store and convert these vitamins from one form to another (can't convert b12 however) so your body does a form of triage. Whichever system shouts the loudest gets the undersupply of whichever b vitamin.  A bit like the previous discussion about b6, b3 and histamine.

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Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16764 on: 12/06/2012 21:24:02 »
Kurtosis or anyone with a good understanding of how niacin might be working. There are those members who find tha niacin doesnít work, and some who have tried initially and it didnít work, but after coming back and giving it another go, found that if itís done just right, it DOES work.

However there are still those who have troubles. Iím confused by one person who, on his first try, found that it workedÖ first time in his life relatively POIS free. But since hasnít been able to duplicate the success. Seems to be following all of the rules. And even duplicating the effort that worked!

1)   if it worked once, it would have to work again right?
2)   Perhaps state of health is an influence, this person is fit and healthy, but seems to require upwards of 500mg to get a flush after several hours of fasting.
3)   I wonder if it could be a matter of zeroing in on one of the other B vitamins instead of niacin?
Any suggestions. Since this is a difficult case, it might give insight into resolving the problem for those who find success with niacin difficult, and therefore getting closer to a real solution for all.

Lots of good questions. Honestly I've no idea. The only thing I can think of is that if there's both a b6 and a b12 absorption problem then substituting niacin wouldn't relieve the symptoms of b12 deficiency but would affect b6 (for all the reasons discussed earlier). Other possibilities including insufficient protein in their diet to rebuild neurotransmitters which use proteins and b vitamins as their building blocks.

Daniel's high-dose b vitamin complex might work better in these cases. I don't know.

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Offline questforlife

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16765 on: 13/06/2012 01:40:39 »
Thank you B_Daniel and kurtosis for acknowledging my comments.

Because the effect of b12 going back into the system is so noticeable, some of you with cognitive and energy issues should feel the effect almost immediately.  I personally have benefited from b12 injections and also a transdermal b12 - there is one called MB12 Transdermal (Cenaverde).

My point with all this is that our symptoms are complex and vast.  So are the symptoms of depleted minerals and vitamins in the body.  When we excite the body or release fluids from the body that are not a waste product, we will be loosing nutrients from our system. 

If there is a absorption issue, then none of these nutrients are replenished.

It would be interesting to see how many of are low in some vital ones such as b12.  We have already seen what effects Niacin has.  B vitamins play a fundamental role in all major functions of our bodies especially the nervous system. 

Interesting some people are misdiagnosed with alzheimer's or dementia, when actually the real issue is a b12 deficiency.

Please do not think for one moment I am simply saying that we do not have a specific illness here and it is just vitamin deficiencies.  I am saying that it could be possible that pois sufferers have bodies that become over everted during times of sexual excitement and release that causes a form of chemical imbalance that takes time to be restored by replenishing nutrients that have been lost.  The energy is going out but is it being put back in.  And could this explain why there is this period after sexual release where we feel go through a period recovery which varies between us.

As we go through this cycle of sexual release and then recovery period, it is very possible our immune systems because impaired and thus bringing on other symptoms to complicate the issue further.

My theory is simple, what comes out must go back in.  Is it going back in?


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Offline Omen 30

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16766 on: 13/06/2012 03:23:48 »
Have been waiting for a post like this here...makes a lot of sense...what is damaged should be repaired...what is wasted should be saved again...

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Offline prister

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16767 on: 13/06/2012 08:03:05 »
Exactly Questionforlife and Omen 30 but the worry is what if something is permanantly damaged?
Supplements do make us feel better but if we do not continue upon it, we again get back the symptoms..!!
And every time i get pois symptoms, i can even see a change in the way my face looks.
I can call it swollen or expansion of my face...!!!
Well POIS can be a genitical problem too?
Because vitamin b12 does help in formation of dna in genes.

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Offline questforlife

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16768 on: 13/06/2012 13:47:31 »
Pister

You are right, long term depletion can cause permanent damage.  But this is an extremity and would be rare.

The human body has a remarkable ability to repair and restore if given the chance and the correct supply of nutrients.

We cannot turn back the clock, but what we can do it get on the road to repair immediately.

I do believe we are more susceptible to pois because of our genetic makeup.  For example poor oral absorption from b12 can be through a lack of gastric intrinsic factor in the stomach which is considered by some as a hereditary condition.



Supplements are not necessarily  the answer here but understanding why we are not absorbing maybe the root of part of the problem.  Supplements could be seen as part of the recovery process, like crutches are to a broken leg.




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Offline prister

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16769 on: 13/06/2012 16:42:28 »
myes, you are absolutely right questionforlife.
but i would like to say that suppression of our symtoms is the only cure.
And by suppression, i mean our own remedies like vitamin b, etc.
Because whenever a research is conducted and when the research is successful,
the answer to the disease would always be a medicine to stop the foreign pathogen.
or else part replacement.
and our problem is different,
we experience problem because of an 'O'.
i too believe in semen allergy but if internal allergy is said, then there is no proof..
none of our tissues is damaged, etc.
we just fall sick.. AND VERY BADLY SICK..
A doctor after observing me said i am having "Anxiety disorder" and NE too does happen in anxiety disorder.(Some symptoms do match it.)
And anxiety disorder happens to brainy people itseems.Well we all here are really strong people and very very intelligent too,
bcz we've been suffering from a long time and we havent given up.. AND WE NEVER WILL. And we do want a research to atleast know what is the actual cause.
But if pois proves to be a genetical disorder,
has a gene ever been modified?
And the doctor also told me to workout vigorously everyday and to burnout 1000 to 1500 calories..
this along with other supplements may prove to be a good cure..

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Offline nathan123

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16770 on: 13/06/2012 17:20:11 »

Hi everyone,

Today I went to have test of Vit B1, B3, B6, B12 & V D levels.   I am under a impression the cost is like other normal blood test.  I enquire the receptionist about the cost for all the above test.  when I saw the estimate, I was shocked.  The cost of these blood tests is 10 times more than other blood tests.  So, due to insuefficient fund I tested only V B12 level.

The normal range of Vit B 12 of my lab where I have tested is 270 - 894 pg / ml.  But my V B 12 level (fasting and without any supplement) is only 102.20 pg / ml.  I am in severe V B 12 deficiency and it is my second day after an o.So, I am feeling we are very near for the solution............

Further, I read that the semen contain (releases) lot of V B12.  So, V B12 deficiency is very familiar for root cause of POIS.

Also, our body has the capacity to convert other vitamins into Vitamin B12 if it is in deficiency.  We all have tried Niacin.  It worked partly.  So, I am under impression that, our body has absorbed B3 (nicain) and the same is converted to B 12 which is in deficiency. 

But I have tried Vitamin B complex tablets, initially for first two days it worked, but afterwords, it is not working at all.  I don't know what is the composition of B 12 in that tablet.  Also that tablet is very cheap and I have doubt about that tablet chemical composition. 

Tomorrow I am going to meet my GP and hoping for the best supplement from him. 

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Offline questforlife

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16771 on: 13/06/2012 20:46:33 »
The problem with vitamin b complex is that the vitamins are rarely in an active form.  SO all they do is burden the liver.  The liver has to convert these to an active form for them to be of any use to the body.

B6 - is called P5P in its active form

Its not what you take, what you absorb and then convert to an active form that makes any beneficial difference to the body.

I am trying transdermal methods.  I take some DMSO cream and then open a b complex pill and then rub them both in my arm.  Or you can buy specific b12 transdermal oil. Or have injections.  These really worked for me.

By doing this, I am bypassing the stomach and the liver.  If this works for you, then this tells you something huge about yourselves, you have an issue with your stomach absorbing or your liver converting.

Remember also that if we are low on these nutrients, things like alcohol, caffeine, sugar etc will deplete us even more.  How many of you are sensitive to these things also?

Like I said pois is specific illness.  If you take diabetes as a comparison, insulin is not the cure but regulates the body and adds something that was missing due to a dysfunctional pancreas. 

All I am trying to do by going down this path is find out what is our equivalent 'insulin' for pois.  This will then lead us to what is our cause.

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Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16772 on: 13/06/2012 22:09:53 »
The problem with vitamin b complex is that the vitamins are rarely in an active form.  SO all they do is burden the liver.  The liver has to convert these to an active form for them to be of any use to the body.

AFAIK you can buy the active forms of b6 (p5p) and b12 (Methylcobalamin) from many health food shops. Brands like solgar do sublingual  Methylcobalamin (1000 ug) and p5p.
There are a few manufacturers that produce coenzyme b-complexes with active forms of b6 and b12.

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Offline observercenter

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16773 on: 13/06/2012 22:10:36 »
Vitamin B-12 is an issue for vegan people and older people. It is found in sources from animal origin.

Vit B-12 deficiency is an Huge problem since it can cause severe and irreversible damage (Megaloblastic anemia): http://en.wikipedia.org/wiki/Vitamin_B12_deficiency#Symptoms_and_Pathomorphology

I have always thought that this Vitamin could be well related to our POIS symptoms, but i have not found any direct relation between niacin(That is working for me since 9 months ago, completely blocking my POIS symptoms) and B-12. Any input would be appreciated questforlife,

Regards,

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Offline Starsky

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16774 on: 13/06/2012 23:07:21 »
Which b-12 to take? Thera are oral: cyanocobalamin, methylcobalamin, adeno...cobalamin or hydroxycobalamin in injections.,,,

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Offline badgerstripe

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16775 on: 14/06/2012 09:55:47 »
My theory is simple, what comes out must go back in.  Is it going back in?


[/quote]

My thoughts exactly Questforlife

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Offline questforlife

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16776 on: 14/06/2012 11:38:30 »
Out of interest, what is the general build of everyone.

Does anyone body build and find it very difficult putting on muscle?


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Offline B_Daniel

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16777 on: 14/06/2012 15:59:16 »
Out of interest, what is the general build of everyone.

Does anyone body build and find it very difficult putting on muscle?



That's a good question for the pollcenter.  I created it myself to save time. 

http://poiscenter.com/forums/index.php?topic=417.0

QuestforLife- You say you take B12 trandermally and via injections, right?  And you say it makes you feel better.  How much better does it make you feel?  25%, 50%, 90%, 100%?
2-5 days, 80% cognitive, tongue-tied, brain fog, lose track of thoughts mid conversation, anxiety, dry eyes, irritable, fatigue.  Believer of both auto-immune AND regeneration theories.  My sessions are much shorter when I've gone 2 wks without.

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Offline questforlife

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16778 on: 14/06/2012 16:16:07 »
Hi B_Daniel

I feel the effect almost straight away.  Its doesn't clear all of my symptoms but I would say I feel at least 50% better.

Noticeably are the following:
Energy levels increase.  I feel uplifted
Elevated Mood
Cognitive thought process
I look less pale after a couple of days of use

Just some I can think of for now.

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Offline meteo74

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16779 on: 14/06/2012 16:41:44 »
I had big shortage of v B12 long time ago (it was 170 ...) and i used v b12 injection until the ratio became 1400(high ratio) , But nothing changed in my pois!!
« Last Edit: 14/06/2012 16:43:47 by meteo74 »

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Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16780 on: 14/06/2012 20:35:13 »
I had big shortage of v B12 long time ago (it was 170 ...) and i used v b12 injection until the ratio became 1400(high ratio) , But nothing changed in my pois!!
You must have noticed some cognitive improvements however? 170 pg/mL is extremely low. Many people would have around 4 times that concentration so you would likely have been experiencing some symptoms of b12 deficiency. 
Perhaps b6 and b12 would work.

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Offline questforlife

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16781 on: 14/06/2012 23:08:22 »
B12 is just part of the equation.  Vitamins and minerals work together to allow the body to function correctly.  Trust me when I tell you, when it comes to alternative therapy, you will not find just one magic bullet, it will be a combination of things.    Afterall all, thats what drugs are that cure other illnesses, a combination of substances.

I want to keep on topic to pois, which the sexual excitement/release causes us to use up a reserve supply of chemicals and loose nutrients.  The recovery period in my opinion is the time taken for the body to regain balance again.  This varies on each of us. 

Id love to try something like a meyer cocktail which would by pass the stomach and liver and put vitamins, minerals and amino acids back into our systems.  These are the building blocks our bodies need to allow vital chemical reactions to happen in the body - production of neurotransmitters, balance hormones, feed vital organs, replenish adrenal glands...the list goes on.  It all begins with what we put into our body, what is then absorbed and then finally converted.  Without know if this primary function is happening, we could be chasing the symptoms for ever.

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Offline Starsky

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16782 on: 14/06/2012 23:16:39 »
There is a under and overmethylation theory... Are POISers over or undermethyleted?

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Offline dante88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16783 on: 15/06/2012 01:57:56 »
Hey guys, I just joined this forum b/c I was wondering why I felt so crappy after having sex with my gf...I don't really have time to read through the 700 pages of posts for POIS, can anyone who has read it kind of summarize what methods can be used to "cure" or lessen symptoms?

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16784 on: 15/06/2012 13:38:16 »
I want to keep on topic to pois, which the sexual excitement/release causes us to use up a reserve supply of chemicals and loose nutrients. 
When this interesting theory was discussed some POIS sufferers said they could have an orgasm without ejaculation followed by POIS. Then we supposed they could have retrograde ejaculation (ejaculation in the bladder). Retrograde ejaculation can be easily diagnosed by checking urine for sperm content with a microscope. Too bad I can't have a dry orgasm to test this. Here is a video showing an excellent view of swimming sperm through a low priced microscope (intended for fertility tests at home):
http://www.youtube.com/watch?v=f_ZgORkEVVg

Id love to try something like a meyer cocktail
That's almost what desensitization with undiluted sperm is.

About the allergy theory
(Important: this injection should be done under medical supervision to prevent serious and potentially fatal side effect like anaphylactic shock) :
Did someone tried to do an injection directly with a small amount of undiluted sperm, without trying with dilutions before?
This should give you a full POIS episode if the theory is true.
« Last Edit: 15/06/2012 16:53:53 by demografx »

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Offline Stef

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16785 on: 15/06/2012 14:05:44 »
Hello, All --

(Both off-topic AND on-topic message here)

I've never mentioned this on the forum, although have spoken with Demo and Daveman about this.  They've given me the emotional support on this one.

This past December, ~ two weeks before Christmas, a young boy (14 y/o)in our town died after a life-long, terrible battle with a very rare disorder called epidermolysis bullosa.  It's one of the unimaginable conditions that no one could ever think up -- not even Stephen King.  It  involves severe external and internal blistering with terrible pain.  His name was EJ.

EJ had been my patient when I worked in home care -- he was 15 months old at the time.  This was one of those love-at-first-site situations -- one look, and I was in love.  He was so feisty, loved to laugh, always wanted to play -- despite the terrible physical pain of his genetic illness.

My family and his became very close friends.  My son used to babysit for him -- for free -- while in high school -- just to give his parents a break.  I babysat, my husband did also -- most people were afraid to because he was so fragile.
They were frequent visitors at our home for dinner, barbeques, etc (although EJ couldn't swallow food -- was fed via a stomach feeding tube).  But he was always ready to party -- no matter how awful he felt.

At age 13 y/o, EJ underwent a stem cell transplant -- a very new but very risky procedure for kids with this condition. The hope was that his condition would improve by at least 50% -- which would have been a MAJOR improvement.

You cannot imagine how grueling a stem cell (or bone marrow) transplant can be.  He suffered every possible side-effect of that transplant, and although his original condition actually disappeared, he remained critically ill from the transplant (received last rites three different times), and eventually died -- struggling until the bitter end.

My family makes regular donations to the organization that represents and supports these kids (some live to young adulthood).  We used to make those donations in honor of EJ, but now they are all in memory of EJ. In this case, part of the donations go to support of research, and part goes to helping the families of these children who are in dire financial crisis.

Even when my husband had been laid off from work -- nine whole months!! -- we continued to make our usual donations -- a little less in amount -- but regularly, nonetheless. (Fortunately, my husband found a very wonderful job after nine months of job-searching -- he's one of the lucky ones in this miserable economy.)
We didn't continue to donate because we are nice people.  We did so (and continue to do so) because money has a spiritual side to it -- it can be a force for good.

Demo and Daveman both know this because I've mentioned it to them in private emails several times -- for me, money is spiritual.  It pays your bills -- bringing you food, medicine, shelter, entertainment.   But it can also help, or even save, a single human being.

We don't tithe our money in the religious sense.  But after our monthly bills are paid, a portion is set aside -- literally -- in a checking account -- that is used strictly for causes that we believe in.  One is, obviously, research for EJ's disease.  Some has already gone to your POIS fund (applause/thanks, etc. absolutely not indicated or wanted here.)  We also directly give donations to the family of another child with EJ's disorder (we will probably never meet them -- they're in Minnesota, we're in CT). Despite having three healthy, biological children, they adopted this little boy.

His mom writes a blog about life with this child -- who she loves as much as she does her biological children.  He underwent that same stem cell transplant, was doing wonderfully, back home, eating, playing, getting into normal mischief! -- but now is suddenly very, very sick.  Something is wrong -- it's still a mystery -- and he's been in the ICU for the past three days.

I read her blog entry early this morning -- things are still looking very bad (but it is not hopeless -- he's slightly improved).

At the end of this mom's blog entry this morning child, she wrote the following --

"The ONLY way we will find a cure is through research. Please don't stop your research donations because Charlie may not make it."


Her statement immediately made me think of this forum, and of your own goal to find the cause, treatment -- and A CURE for POIS.

You can do it
-- even in small monthly, automatic donations.  You can save your lives -- and each other's -- this is the spiritual side of money.  Just a few dollars -- regularly donated -- will bring all of you your lives back. You won't miss those few dollars -- especially if they are made as a periodic donation. Even just $10 dollars -- donated regularly by everyone here -- will bring you your cure.

There are over 100 registered forum members here -- what prevents you from donating to your research fund????

Don't leave this responsibility to those who have already been making donations -- you are in this together -- and will all benefit.  But it won't happen unless you all make it happen. That is the reality of funding research for rare disorders.

Sorry for this long message -- but that mom's quote pertains to POIS sufferers -- and every other miserable disorder that is in need of research.

Stef   




 

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16786 on: 15/06/2012 17:04:02 »
Stef, I know this sounds like a broken record, but I just don't know how to thank you for your incredible efforts here and also for your most powerful words of inspiration.

I suspect that we can pay Stef back by all of us eventually regaining our POIS free lives!

THAT'S the stuff (the HEART) that Stef is made of.

We are extremely fortunate to have your participation.

All my best wishes,
Demo

« Last Edit: 15/06/2012 18:36:03 by demografx »

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Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16787 on: 15/06/2012 19:07:52 »
B12 is just part of the equation.  Vitamins and minerals work together to allow the body to function correctly.  Trust me when I tell you, when it comes to alternative therapy, you will not find just one magic bullet, it will be a combination of things.    Afterall all, thats what drugs are that cure other illnesses, a combination of substances.
I agree but there are numerous problems in b deficiency diagnosis and treatment. b12 deficiency is difficult to diagnose and it appears that many doctors do not know the limitations or issues in the diagnostic equipment. b12 deficiencies can actually be diagnosed as elevated levels due to problems with the diagnostic mechanism. Read http://www.medicine.wisc.edu/~williams/spurious_B12.pdf for more information. This is one of the reasons why I believe my relatives went undiagnosed for a few years as the IF antibodies their bodies were generating interfered with earlier assays.
Indeed medical researchers are realising that mysterious illnesses with b12-deficiency like symptoms are actually b12 deficiencies that are undiagnosed.

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Offline fidalgo

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16788 on: 15/06/2012 19:56:25 »
I just give 100 dolars for POIS fund and I will still donating this amount for the next 12 months. I expect that I could give more in the next months, but this amount I guarantee.

Iīm giving for POIS because this disease screw up my life and I know that, even that we have chance to descover a cure for our own, our chances will be a lot more with especialist researchs and methods.

I know that a lot of people here donīt have a lot of money but the situation isn't easy for no one. For me, in particular, is more expensive because brasilian coin has a half the value of dolar. Letīs go people, letīs donate.

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Offline Nightingale

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16789 on: 16/06/2012 00:04:17 »
Just a quick note on B12, I had an only partially succesful niacin treatment a few days ago, and I decided to go get some B12.  I could only find sublingual methods, but I took a 5000 mcg tablet and nothing happened.  After a couple hours I took another.  This was not good, as I felt pretty crappy after taking the second one.  Most shots are 1000mcg.  This 5000 mcg tablet is some new product from GNC and is obviously a stronger dose.  I took it thinking that sublingual is not nearly as effective as a shot.  I don't want to try this again.

I can find a B12 shot near me only on certain days.  I would have had one if they were available that day, and I will try again sometime when I have symptoms.

I posted this on the poiscenter.com forums.  I really think people should be posting there instead of here, this thread is so unwieldy.  Come start your topics!!!

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Offline B_Daniel

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16790 on: 16/06/2012 06:22:56 »
I saw a brilliant Neurologist today - very sharp and knowledgeable.  Unfortunately, he thinks my problems (biting my fingernails, digestive issues, anxiety, brain fog) are likely stress related, and my social anxiety is nothing more than that.  Sooo frustrating!  Every time I said "It's different for me" I could tell he grew increasingly skeptical of my claims.  Here's how our conversation went:

Dr:  Tell me what do you do?
Me: I'm getting my MBA and working at X company
Dr: Doesn't sound like you have cognitive problems with that pedigree!
Me: Well I've had to work incredibly hard and push myself just to barely make it.   
Dr: And other people don't have to work hard?
Me: Well it's different for me.  I have to struggle just to get out of bed.  And most mornings my head feels foggy and I'm moody and I can't pierce through the fog to think clearly
Dr: Oh well that happens to everyone
Me: Well not in the way it happens to me.  For instance, when I take ritalin, the fog can clear for a while.  It's got to be a problem if it can get so much better like that.
Dr: Most people say they 'feel better' when they take amphetamine-like substances
Me: Well not in the way it makes me feel better.  And how does that explain why it takes my 1.5 hrs to get ready in the morning, my digestive problems, biting my fingernails, my social anxiety, how much worse I feel in days after Orgasms, etc..
Dr: So what other problems do Dr. Bing and Dr. Google think you have?

I don't blame these doctors, it's just that there's no literature to support our claims.  And there are hypochondriacs out there, and there are far more of them than there are of us.  The worst part is even my mom and gf, who see me in my rotten moods, who see me get tongue tied, who see me lose track of my thoughts mid-sentence- I'm pretty sure they think POIS is nonsense.  It's just unacceptable to me.  Anyway, i converted another $500 of my pledge to the donated column.  I look forward to the day when POIS no longer defines me!
2-5 days, 80% cognitive, tongue-tied, brain fog, lose track of thoughts mid conversation, anxiety, dry eyes, irritable, fatigue.  Believer of both auto-immune AND regeneration theories.  My sessions are much shorter when I've gone 2 wks without.

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16791 on: 16/06/2012 08:55:32 »
Just wanted to report back in again.  I'm still doing very well with taking just 500 mg of vitamin C daily.  My pois seems to be gone.  The only symptoms I do get now are just mild headaches ranging to a couple hours after orgasm, and most of the time the headaches never show up.  This seems like a normal sexual response.  So I can O without any consequences.  The only things that really bothers me, especially when I am abstinent for a week +, is the guilt associated with looking at erotic images.  I do not get any guilt if I just "O" without looking at anything, but if I do look I feel guilty.  So I am trying to stay away from that.  I am a lot more myself when I do not look at any porn or anything similar.  It's almost like I am punishing myself for doing that. 

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Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16792 on: 16/06/2012 09:50:09 »
I saw a brilliant Neurologist today - very sharp and knowledgeable.  Unfortunately, he thinks my problems (biting my fingernails, digestive issues, anxiety, brain fog) are likely stress related, and my social anxiety is nothing more than that.  Sooo frustrating!  Every time I said "It's different for me" I could tell he grew increasingly skeptical of my claims.  Here's how our conversation went:

Dr:  Tell me what do you do?
Me: I'm getting my MBA and working at X company
Dr: Doesn't sound like you have cognitive problems with that pedigree!
Me: Well I've had to work incredibly hard and push myself just to barely make it.   
Dr: And other people don't have to work hard?
Me: Well it's different for me.  I have to struggle just to get out of bed.  And most mornings my head feels foggy and I'm moody and I can't pierce through the fog to think clearly
Dr: Oh well that happens to everyone
Me: Well not in the way it happens to me.  For instance, when I take ritalin, the fog can clear for a while.  It's got to be a problem if it can get so much better like that.
Dr: Most people say they 'feel better' when they take amphetamine-like substances
Me: Well not in the way it makes me feel better.  And how does that explain why it takes my 1.5 hrs to get ready in the morning, my digestive problems, biting my fingernails, my social anxiety, how much worse I feel in days after Orgasms, etc..
Dr: So what other problems do Dr. Bing and Dr. Google think you have?

I don't blame these doctors, it's just that there's no literature to support our claims.  And there are hypochondriacs out there, and there are far more of them than there are of us.  The worst part is even my mom and gf, who see me in my rotten moods, who see me get tongue tied, who see me lose track of my thoughts mid-sentence- I'm pretty sure they think POIS is nonsense.  It's just unacceptable to me.  Anyway, i converted another $500 of my pledge to the donated column.  I look forward to the day when POIS no longer defines me!

You said he was a brilliant neurologist but he sounds like an arrogant pratt. Perhaps that comes about from people telling him how brilliant he is. Every question he asked was to confirm his diagnosis of anxiety disorder and you didn't even get to mention the "O" word in which case he could have written down "psychosexual disorder" in his notepad and branded you for life.

Here's how it works in the minds of brilliant neurologists with an infallibility complex.
1) I'm getting a lot of patients who complain of fatigue and memory problems. Could be just "stress"? Let's rule that out.
2) Hhhmm, this patient is getting quite annoyed with the stress question. They're clearly stressed. They seem anxious too. Let's confirm that.
3) They're talking about possible vitamin deficiencies, thyroid illnesses. They're looking stuff up on the internet. Do they seriously believe that the internet can substitute for decades of board-certified medical brilliance. Still the "looking up stuff" means they're obsessing about this. Anxiety disorder confirmed. I'll mention the vitamin and mineral assays.
4) OK, so they accept the assays are normal. Assays are infallible, right!.
5) They're not happy with the anxiety diagnosis. Must offload this person to one of my psychiatrist friends. They can prescribe them something to calm them down.
6) It appears they're bowing to my superior intellect and will see the shrink.
7) My work here is done. Cheque please!

Harsh but I've had the same friggin conversation 3 times in the 20 years since I started to show POIS symptoms. My conclusions are:
- Doctoring is vocational as well as intellectual. Doctors who talk down to their patients are not worth having as, unless there is a one bullet solution, they will not cure you. How would they know if you're cured or not. They don't listen.

- Gregory House MD is a fictional character. As rude as he is, his obsessive need to find the RIGHT cure is 100% preferable over someone who seems genial but is, in fact, intellectually sloppy and/or disinterested.

- Neat diagnosis are favoured. Your work on a postgraduate degree means you couldn't be impaired in their mind. Unless you come to them with a previous diagnosis of cognitive impairment then you're self-diagnosing. The biggest sin a patient could commit. The specific sin of self-diagnosing using the internet is the worst. A major problem is that the Internet is full of people who feel sick but have not been adequately treated by their doctors. Nothing dents a hypothesis infallibility like contradictory evidence.

- There are far too many wannabes of Alec Baldwin's character in the movie Malice. i.e. doctors who believe in their divine wisdom rather than a divine calling.

- Specialisation in medical practice appears to damage systemic thinking in medical practitioners. What I mean by this is that they don't think in an integrated way. The idea that "integrated medicine" or "holistic medicine" is alternative seems vaguely ridiculous. All medicine should be integrated.

- NORD certainly appears very different (as they have to be) but the majority of medical "experts" do not keep up to date with the massive amount of research publications in medicine and related areas such as bio-chem.

- In the future, treatments based on data analytics and techniques such as proteomics and genomics will dominate medical treatments. Either medical training will adapt or doctors will become even further removed from the science of the treatments they prescribe.

I wouldn't advocate shouting at a doctor who's belittling you. Waste of time. But if you went to a mechanic and their walls were covered in certificates from various mechanic schools, photos of them with expensive cars and smiling owners you'd develop some confidence in their abilities. However, if that same mechanic repeatedly failed to fix your car then you'd think they were a sham. If you told other people about the sham mechanic they'd probably believe you. The truth is that we expect a higher standard of quality from our mechanics than we do our doctors and we often tolerate bad behaviour from doctors and other "professionals" than we would an ordinary Joe who in his own way is just as smart and who has a clearer definition of "quality" in their work.
If you want to understand quality as a concept then read http://en.wikipedia.org/wiki/Zen_and_the_Art_of_Motorcycle_Maintenance

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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16793 on: 16/06/2012 13:14:35 »
Yeah B_Daniel, sounds like he's a better salesman than a doctor.

Thanks for your donation.

We are putting together a very good informational blog,  it's from our Spanish crew that got organized as a result of ObserverCenter's exposure. The link above is in English and here is in Spanish.

The idea of this is multi-fold, to have a single place where POIS is explained. When we talk to someone, all we have to say is, if you want to find out more, go THERE. We are trying very hard also to post a definitve definition of POIS there. One that has it stand out on it's own, one that helps to resist the stupidity of these kinds of doctors. We are working to have a clean, informative, professional presentation of what POIS is, who we are and what we are trying to do about it.

We are looking  for collaborators too.
« Last Edit: 16/06/2012 13:17:27 by daveman »
How does Murphey do it??

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Offline meteo74

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16794 on: 16/06/2012 15:16:42 »
Yes , I will summarise what I believe in which taken from pois sufferers IN THIS FORUM.

- Vitamin C.
- Dietary supplements / amino acids.
- Vitamin B complex // B1,B2,B6,b12(injection not tablet).

I WILL TRY THIS ASKING GOD TO GET CURED.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16795 on: 16/06/2012 16:15:33 »

I wouldn't advocate shouting at a doctor who's belittling you. Waste of time.


kurtosis, you're right, it's a waste of time.

I just fire the doctor - on the spot - at the slightest hint of abuse.

Life's too short to put up with his/her crap in our condition!

Anyone interested: Please click H E R E to read The Top 10 Reasons To Fire Your Doctor!

« Last Edit: 16/06/2012 16:23:21 by demografx »

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Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16796 on: 16/06/2012 19:39:01 »

I wouldn't advocate shouting at a doctor who's belittling you. Waste of time.


kurtosis, you're right, it's a waste of time.

I just fire the doctor - on the spot - at the slightest hint of abuse.

Life's too short to put up with his/her crap in our condition!

Anyone interested: Please click H E R E to read The Top 10 Reasons To Fire Your Doctor!


Sorry for my rant earlier. I just read B_Daniel's post and got really annoyed. I think the mechanic analogy is a good one however :)


Yes , I will summarise what I believe in which taken from pois sufferers IN THIS FORUM.

- Vitamin C.
- Dietary supplements / amino acids.
- Vitamin B complex // B1,B2,B6,b12(injection not tablet).

I WILL TRY THIS ASKING GOD TO GET CURED.
Or all of the above.
- Vitamin C is an anti-histamine and is used in the creation of collagen, the fundamental connective tissue in our bodies.
- amino acids are used to make neurotransmitters.
- in order to do so, b vitamins are used, b6 in particular. b12 is required for the formation of red blood cells (to oxygenate your body and brain). It's also required for the synthesis of DNA in the creation of new cells and fatty acids including the myelin sheaths that protect our nerves.

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Offline observercenter

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16797 on: 16/06/2012 19:39:36 »
I saw a brilliant Neurologist today - very sharp and knowledgeable.  Unfortunately, he thinks my problems (biting my fingernails, digestive issues, anxiety, brain fog) are likely stress related, and my social anxiety is nothing more than that.

Hi B_Daniel. We have weapons to combat these claims. You could show the videos of The Learning Channel and the ABC Australia to your doctor. If he is so confident about this being an anxiety problem, let him explain to you why an injection of your own semen could produce a skin reaction and produce POIS symptoms.  You could show him the different papers that have been published until now. Donīt let him to push you on this issue; you could retaliate with all the information we actually have(And we would have more in the coming months).

EDIT: The best thing you could do is to send the doctor the same blog link- all valuable information is at this site- that Daveman was talking about. http://poisenglish.blogspot.com.es/
« Last Edit: 16/06/2012 22:22:59 by observercenter »

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16798 on: 16/06/2012 23:59:06 »
Thanks to ALL the people who gave money to NORD. Really nice to see after 27 years with POIS.

Id love to try something like a meyer cocktail
The idea to bypass liver and stomach is good.
Besides this I think the high dosage in this cocktail would not be necessary for POIS.
It takes only a few days to partially or completly recover from POIS. For example, how much b12 from food can we accumulate in sperm and organs in a few days, not a lot. So if the replenishment theory is exact it seems the root cause of the recovery is not coming from mega doses, it would rather be from a combination of substances and/or from better absorption. Semen storage would slightly increase blood concentration of some element(s) allowing our recovery.

Just wanted to report back in again.  I'm still doing very well with taking just 500 mg of vitamin C daily.  My pois seems to be gone.   
Good news.
I took 500mg to 1g/day of vitamin C for several months when I was around 20. I felt only positive things on it until I started to have anxiety. I searched why and found that vitamin C could deplete zinc, magnesium, copper, b12, vitamin P. An other thing, when someone takes 1 g one day and 500mg the next day there's a transient vitamin c deficiency so it's a good idea to decrease gradually to avoid this.
« Last Edit: 17/06/2012 03:01:00 by martin88 »

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Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16799 on: 17/06/2012 12:28:18 »
Good news.
I took 500mg to 1g/day of vitamin C for several months when I was around 20. I felt only positive things on it until I started to have anxiety. I searched why and found that vitamin C could deplete zinc, magnesium, copper, b12, vitamin P.
Hi Martin88,
Actually, your comments about vitamin C leading to mineral depletions are not proven. Copper depletion has been shown in one study but the scare-mongering that high-levels of vitamin c (>200mg) automatically depletes the body of a wide variety of nutrients comes from a few internet pages that overstate or misrepresent the findings of some (test-tube) in vitro studies that show what people know, that C will bind with a range of minerals. Also, the particular doctor who has several pages devoted to vitamin C making people sick has not carried out any double blind study himself to show the veracity of his claims.

Did you get your levels of these nutrients tested? It is relatively inexpensive to supplement these in a multi-vitamin and deficiencies may suggest an absorption problem rather than vitamin c being the culprit. Anxiety may be caused by any foods or drugs that increase the amount of serotonin in your CNS sharply. This is a known side-effect of SSRIs. This anxiety would abate after  a while, if that was the cause.

GoingGrazy was taking C with salt (sodium chloride) giving it a sodium ion to bind to when excreted. It appears unlikely he's suffer from depletion of other trace minerals but without regular blood tests we wouldn't know. I don't think there's any studies showing that anxiety is caused by high dose vitamin C this but he doesn't seem to be suffering from anxiety symptoms. Actually, in my experience I feel it decreases anxiety. Like a mild SSRI.

We put in place a 2 week rule and it appears that GC has gone well over the 2 weeks while still reporting a positive change from the treatment he experimented with. I don't know why it appears to have worked but it has. This is fascinating. Even if nobody else reported a cure from this we need to understand what's happened with GC.

I guess this shows us why we need NORD to conduct further research into POIS, examining treatments have had some success with (e.g. b vitamins, fenugreek and C) to try and figure out what might be happening in these cases. Is there'a  normal strategy for such studies? Who gets involved? How long do they run for etc.?