[B_Daniel]

I had my B12 tested 2 wks ago but the damn doctor is out of town for a month and the office won't give me my results without a doctor to go over it.  it's bullshit.  I'll report it once i get it. 
I agree with Desperate, good post Tony, but don't be too hopeful that youve been cured.  I'd imagine B12 is a stimulant, and most stimulants give me short term relief.  Definitely let us know after a couple weeks, good or bad.

Starsky, although your announcement was/is monumental news, it appears as if the forum is starting to chatter about other things and within time the day to day of this forum will be in full swing.  Please make sure to keep us posted every step of the way.  I want to just reiterate that I'm a big proponent of this and am very excited to finally have more proof that this works.  If you can show that Animus's results were not a 1-off case, and get his same positive results while leaving your family jewels in-tact, me and I'm sure many others will have to seriously consider it.       

[makrofag]

POIS is most likely not just one disease with a specific cure. Although symptoms may be similar, the underlying cause may vary with the individual. In western medicine, if a patient has stomach pain and is diagnosed with a peptic ulcer, there is one treatment protocol for everyone. In Traditional Chinese Medicine, the ulcer would be considered the symptom, while the root cause may vary widely according to the individual and would thus be treated differently.

Well.. how many diseases are known to cause trouble after an orgasm?? Yes there is a sort of post orgasmic migraine but other than that - just POIS. Seriously it is actually very very unlikely that there could be main core causes to POIS. Also more and more people are finding that the Niacin actually works for them because they did not used it in the way their body needs it to work. If that is not an example that POIS has probably the same core problem for everyone is not really following the scientific method.

[Mer]

Hi All,

I am wondering if has anyone done a series of complete blood and hormone level tests on a similar interval as following:

1st test: on day 7 of last ejaculation
2nd test: on day 10 of ejaculation
3rd test: a minute after ejaculation
4th test: 30 minutes after ejaculation
5th test: 1 hour after ejaculation
6th test: 5 hours after ejaculation
7th test: 1 day after ejaculation
8th test: 2 days after ejaculation
9th test: 5 days after ejaculation
10th test: 7 days after ejaculation
11th test: 10 days after ejaculation

Of course this series of tests must be set up by a physician to minimize and control the number of random factors that could affect the test results.
I guess whatever the cause of POIS is it could somehow be related/correlated to the parameters obtained from the tests.

Also, if several people do the same series of test with quite similar set up some correlation could be identified that could help us narrow down our focus and some of the factors. We could then start conducting research on them.

There are a lot of us in this forum and we could probably divide the research tasks among us.


I am not sure if anyone has done this yet, however, I think this well provide us with some useful information.

We could use these data as our starting point in the research. Then add a factor and repeat it until something interesting comes up.


Any responses/comments are welcome!

Thank you.

[daveman]

Might be a little difficult to coordinate all that HERE.

[nordnurse]

This type of data would be perfect for Daveman's site -- I think it would get lost in between the many comments and theories that would pop up in between on NSF..

But it's an interesting and potentially helpful idea, Mer!

It's the biomarkers of POIS that need to be discovered. More than anything, I think that the answers lies in discovering those biomarkers.

Just as an aside, unless one has insurance, these blood tests would be very expensive.  I'm not even sure that insurance would pay for most of them.

Try to focus on the research, men.  Without it, there will be no cure.  No donation is too small.

Stef

[Mer]

I am not sure about other countries.. but here in Canada as long as your doctor agrees to take the tests you won't be paying anything for these tests as the provincial insurance covers it.

I have talked to some researchers about this illness, they were so reluctant to say anything about it as there is not data out there to give some insight about this illness.

[kurtosis]

I have been reading this thread for some time now, and I have some thoughts...

1) POIS is most likely not just one disease with a specific cure. Although symptoms may be similar, the underlying cause may vary with the individual. In western medicine, if a patient has stomach pain and is diagnosed with a peptic ulcer, there is one treatment protocol for everyone. In Traditional Chinese Medicine, the ulcer would be considered the symptom, while the root cause may vary widely according to the individual and would thus be treated differently.

2) I suffer from POIS and I have a vitamin B12 deficiency. I realize that this has been covered already, but not in enough detail. B12 is not well understood, but we do know that it is extremely important, and the "normal" reference range is from around 200-800. Thus some people may require more or less B12 according to physical constitution and lifestyle.

3) I had an emission last night and I felt lousy today. I also got my first 1000 mcg injection of cyanocobalamin today, and I am happy to report that my symptoms have completely disappeared now. This has never happened before. I will keep everyone updated as I proceed.

4) Injections are the only reliable way to replete B12 stores once you are deficient. If you can get hydroxocobalamin 1000 mcg injections from your physician, do so. My GP only wanted to give me cyanocobalamin, which apparently works, but it's not as efficient.

I believe I have found the cure for me. Every other essential nutrient can be obtained from a whole-foods plant based diet. B12 is the only essential vitamin that is not manufactured by animals or plants, only microorganisms. We used to eat plenty of B12 from soil borne bacteria on unwashed produce. Nowadays, in our USDA approved sterile supermarkets...no more B12. Sperm volume and motility was shown to increase by up to 30% in some test subjects and there is a significant amount of B12 in semen. I will keep you posted...But based on my preliminary observations, it does not seem logical that POIS is an autoimmune allergy. It strikes me as being a deficiency rather than some rare disorder.

But autoimmune disorders and b12 deficiencies are related. Have a look at http://www.livestrong.com/article/417959-b12-deficiency-and-autoimmune-disorders/
Pernicious anaemia is thought to be caused by an autoimmune disorder that attacks Intrinsic Factor. The jury is still out on whether POIS is a deficiency problem caused by an immunological disorder or an immunological problem caused by a deficiency disorder. Causality is difficult to determine here. We may even develop a cure or treatment without being 100% sure what's causing what. This is the case for some other diseases.

Anyway, for the first time in 20 years, I have no noticeable POIS symptoms. I'm taking Gingko, Huperzine and a high-strength b complex with active co-enzymes of b12 and b6. I'm also taking krill oil. The Huperzine seems to have sorted out the eye problem. I didn't take it yesterday morning and the eye control problem was back. 200mcg of it and within 10 minutes it's fixed and my memory is greatly improved. I've had 4 O's in a week with no diminishment in cognitive performance.

[daveman]

I will be looking into testing similar formulations  with more people, especially those who have had problems with just niacin. Also we have to be careful with higher strength B complexes, and find a safe balance.

The tests of course are not practicable here.

[desperate man]

Daveman spoke the truth.Watch out with vitamin B-s! You take in one and you upset the balance of the others.
If I were you I would find a doc who is willing to do a vitamin level test.
It's the best thing you could do.For example I am also following a thread of post accutane sufferers and the drug has made their levels chronically low as a 70 years old person who spent the last few years at home without getting sunshine.
Vitamin D is essential for intestinal,heart,brain health.Vitamin B is essential for brain health and detoxification.I'm sure if you have low levels of vitamin B then your liver is messed up and you are full of toxins too.
If niacin is helpful then you need to find out why is it helpful for you in the first place.Niacin has a relationship with histamine levels.Histamine levels are responsible for allergic reactions.If you have very high histamine levels you will be itchy all day and have watery eyes,constant sneezing etc. because of dust in the air also get severe allergic reaction from certain things,food likes anaphylactic shock for example so it is worth to check out.
If antihistamine works for you then you know that the problem is high histamine levels and a crazy autoimmunity...
But if you think this is not enough then here is a twist: there is something causing the high histamine and autoimmunity which you will need to find out and address the problem.Besides antihistamines come with side effects (you guessed it right,ED is one) and the last thing we need is more drugs for our weak bodies.

[B_Jim]

Thank you demografx, global moderator for all your time on the forum. We had often need you to share ideas and avoid conflict here. I especially remember the little time you have left the forum after your surgery.  Amazing!
We have a job to finish but since 2012 I have the feelings we have made the largest part.  Friendly.

[kurtosis]

Thank you demografx, global moderator for all your time on the forum. We had often need you to share ideas and avoid conflict here. I especially remember the little time you have left the forum after your surgery.  Amazing!
We have a job to finish but since 2012 I have the feelings we have made the largest part.  Friendly.

Many thanks to Demografx. Guess I'll have to keep an eye on both poiscenter and this as there's posts on both. I won't be giving up the NSF as new posters will find this forum and will need help and direction to poiscenter. I think that if we abandoned this outpost of planet POIS we may miss new posters and ideas.

[tonytwoton]

Just a quick update...

I have continued receiving daily injections of b12 cyanocobalamin. I am experiencing greatly increased fatigue. I feel like sleeping all the time. I can only seem to stomach small meals. My Chinese acupuncturist told me that some people do get a reaction to b12 injections, and to take a b-complex multi vitamin.

Taking a step back, my overarching goal is to eat a balanced whole foods plant based diet that will supply me with all the adequate vitamins, minerals, enzymes, cofactors, etc. that my body needs. However, I am beginning to understand that even with a diet that includes locally grown, organic food to the maximum, my body may still be deficient in certain things.

I am not a "locavore" or a fanatical vegan zealot. I wish to be as pragmatic as possible. Local, organic food provides the maximum amount of all essential nutrients. Food grown with chemicals in faraway lands is severely depleted of much of its nutritional value even if it is not spoiled. In this day and age with all the stress from work, pollution, toxic chemicals, electromagnetic radiation, I think eating whole foods is even more important. That said, there are nutrients that cannot be replenished exclusively with food. Here is what I have come up with so far:

1) Vitamin D. Although D3 is the active form, there are apparently hundreds of isomers of Vitamin D that can only be manufactured by skin from exposure to sunlight. It is necessary to expose at least 60-80% of the body to the noon-day sun for at least 30 minutes to get enough D. Also, showering with soap for 48 hours afterwards inhibits absorption apparently. http://nadir.nilu.no/~olaeng/fastrt/VitD_quartMED.html

2) Vitamin B12. Only manufactured by microbes and found in animal products. Nonetheless, many omnivores are deficient in B12.

As far as I know, whole grains, vegetables, legumes, fruit, and nuts can provide all the other essential nutrition the body needs. It may or may not be necessary/beneficial to eat meat, eggs, and dairy in small amounts.

If nutritional deficiencies can be totally ruled out for POIS, then research can be focused in other areas, but it seems like food/diet might be a good place to start...

[kurtosis]

I will be looking into testing similar formulations  with more people, especially those who have had problems with just niacin. Also we have to be careful with higher strength B complexes, and find a safe balance.

The tests of course are not practicable here.

Another possibility is supplementation with pregnenolone. This is a steroid and should really only be used if there's a tested hormone deficiency (e.g. progestogen) which it can help resolve. The hypothesis that POIS is related to this is mentioned on the wikipedia page. It would also raise acetylcholine levels which are reduced in myasthenia gravis. It's the reduced levels that cause things like the double vision and drooping eyelids.

[desperate man]

It would also raise acetylcholine levels which are reduced in myasthenia gravis. It's the reduced levels that cause things like the double vision and drooping eyelids.

Can you provide a link to scientifically confirm this? I have droopy eyelids since child age.Do you guys have that too?

[CertainlyPOIS]

I had my B12 tested 2 wks ago but the damn doctor is out of town for a month and the office won't give me my results without a doctor to go over it.  it's bullshit.  I'll report it once i get it. 
I agree with Desperate, good post Tony, but don't be too hopeful that youve been cured.  I'd imagine B12 is a stimulant, and most stimulants give me short term relief.  Definitely let us know after a couple weeks, good or bad.

Starsky, although your announcement was/is monumental news, it appears as if the forum is starting to chatter about other things and within time the day to day of this forum will be in full swing.  Please make sure to keep us posted every step of the way.  I want to just reiterate that I'm a big proponent of this and am very excited to finally have more proof that this works.  If you can show that Animus's results were not a 1-off case, and get his same positive results while leaving your family jewels in-tact, me and I'm sure many others will have to seriously consider it.       

My vitamin b12 and folic acid came out good.

726                out of     211 - 946 pg/ml
15.4                 out of >3.0ng/ml
for folate acid considered deficient if <2.2 ng/ml

i did this test in pois.couple of days after ejaculation

[nordnurse]

First I want to apologize that i will not donate this year to NORD to seek the cure. Today I decided to GET THE CURE. I started to search Urologists here in Poland which will help me in the realization of the plan:
-banking my semen
-doing a close-ended vasectomy (cost about 200 US Dollars and no problem in my country with doing this)
-removal of the seminal vescicles
-eventually TURP, but perhaps I wont need them if I will take finasteride

As you can see its a little bit modificated Animus Solution, because no one in Poland is willing to do a orchiectomy on demand and as Animus says it does not help a lot. The two other parts of the plan, I think I must do aborad: I hope I will find someone in Romania or Hungary (you can have there even Kidney transplants from a living donor).

Please help me and say what do you think about it?

Wow, that's a bold move Starsky!  Can you explain the thought process behind each procedure?

You'd have the procedure done one step at a time, too, so if just one of them "cures" you we'd be able to pinpoint which one, right?

Does insurance cover any of this?  How much does each part cost? 

What side effects are there for each procedure?  If your doctors think the risks are on the low side, then i'd be inclined to think favorably about it.  If we're talking strictly benefits here and not looking at the risks, I'd guess (completely unknowingly) that these 3 procedures would capture the problem. 

People have these procedures done for a whole variety of reasons... cancer, enlarged prostate, not wanting kids, etc.  I think this is as good a reason as any.  The only difference, and the only reason this is scary in my opinion, is that the cure isn't guaranteed. 

I'd actually be willing to donate towards helping you get this done.  The knowledge we'd gain from your procedures would be helpful to any future research and might teach us a great deal.

I will not do it in one operation because i dont want a POIS Overkill and want to let anybody to know which of those are really helping. EDS had a vasectomy (a closed as he remembers) and it does not helped so the whole Waldinger theory is ruined. I think Walldinger has a treatment but he has a false theory. And i dont want the SCIT, its too much pain and side effects and there are just ONE totally cured.
 Yes, i will sacrifice me in the name of the research. Besides i give so much for suplements and laboratory testing that i think i could have done this surgery so many times. But dont be affraid, the decision was not made because im depressed. I was thinking about this solution for more than a year. I wanted to say that i begin just with the preperation, because i want to know how much it costs and who can do it. With vasectomy (closed with a titanium clip, without cutting) there is no problem, the problem is with the vesiculectomy beacuse its more complicated and i must find a private clinic and a sympathetic doctor.

Starsky,

I received an e-news today at NORD regarding finasteride.  It came in the daily medical updates I receive from the medical-legal online journal, AboutLawsuits.com.
I'm about to post it on poiscenter.com, as a new thread in "General Alternative Causes and Treatments of POIS." 
http://poiscenter.com/forums/index.php?board=7.0
Please read it (and anyone else who is considering the use of finasteride -- please read!).

Stef

[kurtosis]

It would also raise acetylcholine levels which are reduced in myasthenia gravis. It's the reduced levels that cause things like the double vision and drooping eyelids.

Can you provide a link to scientifically confirm this? I have droopy eyelids since child age.Do you guys have that too?

Read http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001731/

and http://www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm
"In myasthenia gravis, antibodies block, alter, or destroy the receptors for acetylcholine at the neuromuscular junction, which prevents the muscle contraction from occurring. These antibodies are produced by the body's own immune system. Myasthenia gravis is an autoimmune disease because the immune system—which normally protects the body from foreign organisms—mistakenly attacks itself...

Medications used to treat the disorder include anti cholinesterase agents..."

[desperate man]

I had my B12 tested 2 wks ago but the damn doctor is out of town for a month and the office won't give me my results without a doctor to go over it.  it's bullshit.  I'll report it once i get it. 
I agree with Desperate, good post Tony, but don't be too hopeful that youve been cured.  I'd imagine B12 is a stimulant, and most stimulants give me short term relief.  Definitely let us know after a couple weeks, good or bad.

Starsky, although your announcement was/is monumental news, it appears as if the forum is starting to chatter about other things and within time the day to day of this forum will be in full swing.  Please make sure to keep us posted every step of the way.  I want to just reiterate that I'm a big proponent of this and am very excited to finally have more proof that this works.  If you can show that Animus's results were not a 1-off case, and get his same positive results while leaving your family jewels in-tact, me and I'm sure many others will have to seriously consider it.       

My vitamin b12 and folic acid came out good.

726                out of     211 - 946 pg/ml
15.4                 out of >3.0ng/ml
for folate acid considered deficient if <2.2 ng/ml

i did this test in pois.couple of days after ejaculation

Hold your horses! Is that 15.4 folate or folic serum? You know that high value means you are not converting it properly?

[B_Daniel]

My vitamin b12 and folic acid came out good.

726                out of     211 - 946 pg/ml
15.4                 out of >3.0ng/ml
for folate acid considered deficient if <2.2 ng/ml

i did this test in pois.couple of days after ejaculation

K, I finally got my B12 readings back.
754        out of     211 - 946 pg/ml

So it is fine, if not even on the high side.

[B_Daniel]

I take Wellbutrin XL 150 mg tablets.  1 day on, 1 day off, 1 day on, 4 days off, repeat.  It's not perfect, in fact, far from it.  But I'm mostly functional at work with it and it's the closest to normal as I've come in the year and a half I've been on this forum.  If you have a primary care physician it should be easy enough to get.  I've only been doing this for 4 wks so still experimenting, but at this point I don't see any reason why it won't continue to work.  If you have constant pois, like me, i highly recommend you talk to your doctor about trying it.   

[POIS-SUFFERER]

Anyway, for the first time in 20 years, I have no noticeable POIS symptoms. I'm taking Gingko, Huperzine and a high-strength b complex with active co-enzymes of b12 and b6. I'm also taking krill oil. The Huperzine seems to have sorted out the eye problem. I didn't take it yesterday morning and the eye control problem was back. 200mcg of it and within 10 minutes it's fixed and my memory is greatly improved. I've had 4 O's in a week with no diminishment in cognitive performance.

Can you elaborate on the specific brand information?

[Prancer]

it's the closest to normal as I've come in the year and a half I've been on this forum.

That's excellent to hear you are getting some relief from your constant POIS. I still don't know if I have constant POIS, but it's possible. I was recently reading through the archives here and discovered that my symptoms are very similar to yours (90% cognitive). I also agree with you that the times when I have a very strong urge to experience orgasm I feel my best. I plan on abstaining starting later this month for as long as possible. I should know then if I have it.

[kurtosis]

Anyway, for the first time in 20 years, I have no noticeable POIS symptoms. I'm taking Gingko, Huperzine and a high-strength b complex with active co-enzymes of b12 and b6. I'm also taking krill oil. The Huperzine seems to have sorted out the eye problem. I didn't take it yesterday morning and the eye control problem was back. 200mcg of it and within 10 minutes it's fixed and my memory is greatly improved. I've had 4 O's in a week with no diminishment in cognitive performance.

Can you elaborate on the specific brand information?

Now Foods coenzymated B-complex. Also have Solgar Megasorb B. The ginkgo and huperzine are both from Source Naturals. All available in the UK.

[lauracostis]

Good post Tony! I have been suspecting Lyme for a long time which includes a severe deficiency of B12.
You give hope.

I was tested for Lyme and it was negative.  However, some tests are not accurate due to the evolution of lyme disease.  My physician went over the lab results with me and we both determined that Lyme disease was not a factor in my case and the very expensive, accurate lab was not ordered.  If you believe Lyme may be responsible for some of your symptoms you can easily get a Lyme test.

[desperate man]

Good post Tony! I have been suspecting Lyme for a long time which includes a severe deficiency of B12.
You give hope.

I was tested for Lyme and it was negative.  However, some tests are not accurate due to the evolution of lyme disease.  My physician went over the lab results with me and we both determined that Lyme disease was not a factor in my case and the very expensive, accurate lab was not ordered.  If you believe Lyme may be responsible for some of your symptoms you can easily get a Lyme test.

"We are told by manufacturers, health departments and clinics that the Lyme ELISA tests are good, useful tests, but in two blinded studies that tested laboratories for accuracy, they failed miserably. Lorie Bakken, MS/MPH, showed in her studies that there was not only inaccuracy and inconsistency between competing laboratories, but also between identical triple samples sent to the same lab. In other words, identical samples often resulted in different results! In the first study, forty-five labs correctly identified the samples only 55% of the time.

In the latest study by the College of American Pathologists, 516 labs were tested. The overall result was terrible! There were almost equal numbers of false positives as false negatives. Overall, the labs were 55% inaccurate. The labs could only give a correct result 45% of the time. You are actually better off to flip a coin!"

I have been bit by those **ckers more than 4 times in my life.I have nearly all the symptoms.Many CFS sufferers have Lyme but have not been diagnosed yet.The last time I went cycling with a friend and got bit by a tic.I asked my friend and he has never had any tic bites while those little bastards find me everytime I go near a forrest.Somehow I attract them but why? Body odour?