[demografx]

Dave, you have performed one miracle after another here, so I'm not surprised!

I signed up for your walk-on-water lessons, too!

[demografx]

Individual efforts are (variably) valuable for alleviating [POIS] symptoms but I have no doubt a more methodical research is invariably better if the goal is to identify/confirm the causes and develop "truer" cures.

I'm sure all of us have financial obligations, most of which seem more important than this research fund. It's not my place to ask you to re-evaluate those obligations, but I highly recommend that you perhaps commit to a recurring, automatic donation of small payments, an option NORD offers. Otherwise, I suggest you set up a recurring reminder in your calendars or smartphones (weekly, monthly, bi-monthly, etc.) to manually make a small donation.

Thank you, Ali!

From the POIS funding thread at:
http://poiscenter.com/forums/index.php?topic=168.30

[daveman]

Dave, you have performed one miracle after another here, so I'm not surprised!

I signed up for your walk-on-water lessons, too!

I've already found a survey software we can use. I'm going to have to spiff it up a bit, and link it into the forum like the chat software. We can use it for both new surveys, like for niacin etc. AND to recompile older information that's in text form, with help from members entering data.

Soon we'll have data from 5 yrs of effort in a relational database. Something you've wanted for a long time Demo!!

[demografx]

               Wow!!!

[kurtosis]

Over the last few pages in the forum, here are the enzymes/ supplements/ vitamins/ treatments that have been suggested:

high grade omega 3s
salmon and seafood
sweet potato
wobenzym
bromelain
papain
multi-enzyme@ nuzyme
spinach
chocolate
B3, B3, B6, B1, B12
vitamin D
olive leaf extract
saw palmetto
garlic
krill oil
vitamin C
zinc
magnesium
zma
tripterygium wilfordil
zymnese
chlorella lecithin
folic acid
spirulina
quercetin

It's difficult for me to separate pie-in-the-sky treatments from the real ones, based on forum posts.  I keep hearing about a page that aggregates all of our treatments but I've never seen it.  And even if there were a list, I'm not sure that's enough.  We desperately need a way to vote on all this stuff. 

It's also possible that not everybody's POIS is the same. That we may all have problems but that the root cause may be different or subtly different for some of us.

Of your list here's what worked / didn't work for me. I've no problem in entering this into a survey but getting the survey categories and responses right might be non-trivial
Some of these things work well in combination, some can have an effect taken by themselves but it's improved in combinations. It's not as simple as saying 1 thing works or doesn't.

Your list.
high grade omega 3s - Define "high grade". I found the seven seas orange syrup stuff with vitamin C to be the best for me. I also like their "high strength" product.  I tried expensive brands with exotic extraction and purification processes for EPA and DHA and found them to be less effective than the relatively cheap Seven Seas product. The oil worked to reduce inflammations and acne dramatically. Helped with clarity of thought in combination with niacin but NOT taken at the same time where it seemed to reduce the flush.

salmon and seafood - Salmon and Tuna are pretty good. But nothing like the effects of the aforementioned cod liver oil.

sweet potato - ate quite a bit of this. I didn't discern any effects.

wobenzym - never tried it.
bromelain - never tried it.
papain - never tried it.
multi-enzyme@ nuzyme - benefitted digestion issues.
spinach - no discernible effect.
chocolate - helped with concentration but increased acne. Couldn't continue with "chocolate therapy" for that reason.

B3, B3, B6, B1, B12 - B3 (Niacin) and B6 have worked wonders but  the others don't do much for me when taken independently. I take the others at ~100-200% RDA levels (normally in a multi-vitamin) .

vitamin D - by itself, no effect. In cod liver oil I noticed an effect. Whether any of this could be attributed to Vit D, I don't know.

olive leaf extract - no effect.
saw palmetto - never tried it.

garlic - improved stomach issues. Improved energy levels and clarity of thought. Made my breath stink I'd certainly recommend POISers to give it a try.

krill oil - worked similar to my favorite orange syrup cod liver oil but at a multiple of the price. This was the only one of the more exotic fish oils that delivered a similar benefit to the cod liver oil product mentioned so I've considered using it more. I'm also interested in seeing if Astaxanthin delivers longer term benefits. The brand I used was superba and I plan on trying it again next month. 

vitamin C - works a treat at improving energy and mental clarity but you need to take it in very large quantities (several grams every day) AND avoid brands which have artificial sweeteners or colorings that can actual impede attentiveness. I'm talking about "sunset orange" colorings, aspartame etc. Do your homework.

zinc - worked in combination with magnesium and b6. Delivered modest improvements to stamina and focus by itself.

magnesium - similar to Zinc. Made me slightly calmer but that may have been a placebo effect.

zma - works for me BUT works best when taken at night rather than in the morning or during the day.

tripterygium wilfordil - never tried it.

zymnese - never tried it.

chlorella - take it with spirulina. Improves mental clarity and in combination with vitamin c (taken within 30 minutes of each other) I can literally feel my POIS symptoms clearing after an O.

lecithin - appears to have some benefit but only in combination with fish oils (or piracetam, see below)

folic acid - take it as part of a multi-vitamin but I noticed a benefit to energy levels and memory when I took it with vitamin C alone, without any other supplementation.

This highlights a general problem. Few people take one supplement by itself. Synergistic effects are likely as nutrients used in one biochemical reaction may cause depletions of others that are replenished by other supplementation. Ratios and complimentary supplementations appear important but are very difficult to capture in surveys.

spirulina - taken with Chlorella. These 2 together really give me a boost of energy and reduce the tension and fuzzy feeling that, for me, define POIS.

quercetin - never tried it.

Other things I've tried
piracetam - gives a very temporary lift if I don't take the other supplementations. Effects can last for over a day if I take ZMA, fish oils, niacin and lecithin. These effects include increased creativity and recollection of past events. Piracetam gave me hope that when we figure out the "cure" it can help POISers glue their brains back together. 

However, piracetam only gives the good and expected results for me when I'm feeling good from the other supplement regime I discussed here and with jferr. Without those supplements, it doesn't give me the boost that many users report.

Tyrosine - gives a short term but powerful boost of energy and focus. For example, I can treble (or more) my average tetris score after about 1g of tyrosine. It's definitely having an effect and I've seen several studies to back this up.

Onto the problems Effects fade if I try to take it every day and it makes me feel quite aggressive by the 3rd - 4th day.  It seemed so promising when I took it first and I still think it could be useful as part of a post O protein supplementation regimen. However, I feel I get enough of these proteins in my chlorella & spirulina.

taurine - similar to tyrosine, this gives a short term boost of cognition and energy. I found there's less long term fade and I may restart experimentation with this.

So that's a potted summary of about 5 years of treating my body as a chemistry lab. Anything to get over the dreaded POIS symptoms.

[daveman]

Surveys often don't link the user to his vote, so this is a slight touch I'm going to give to ours. Of all the surveys that we will undertake, an important one will be a POIS profile per individual.

Later when we do other surveys, each individual will be linked to his answers so that we can always extract information relative to a certain profile.

The survey programs that are available (free) usually have a limited set of evaluation criteria and usually just say, "to this question 47.3% andswered 'yes' and 52.7% answered 'no', useful, but limited.

But once the database is available, we can use different programs to extract the same answers but related to a specific "user profile", "Individuals that suffer mostly physical symptoms don't respond to niacin, and those with cognitive problems do" for instance.

So it should be interesting.

[badgerstripe]

Over the last few pages in the forum, here are the enzymes/ supplements/ vitamins/ treatments that have been suggested:

high grade omega 3s
salmon and seafood
sweet potato
wobenzym
bromelain
papain
multi-enzyme@ nuzyme
spinach
chocolate
B3, B3, B6, B1, B12
vitamin D
olive leaf extract
saw palmetto
garlic
krill oil
vitamin C
zinc
magnesium
zma
tripterygium wilfordil
zymnese
chlorella lecithin
folic acid
spirulina
quercetin

It's difficult for me to separate pie-in-the-sky treatments from the real ones, based on forum posts.  I keep hearing about a page that aggregates all of our treatments but I've never seen it.  And even if there were a list, I'm not sure that's enough.  We desperately need a way to vote on all this stuff. 

It's also possible that not everybody's POIS is the same. That we may all have problems but that the root cause may be different or subtly different for some of us.

Of your list here's what worked / didn't work for me. I've no problem in entering this into a survey but getting the survey categories and responses right might be non-trivial
Some of these things work well in combination, some can have an effect taken by themselves but it's improved in combinations. It's not as simple as saying 1 thing works or doesn't.

Your list.
high grade omega 3s - Define "high grade". I found the seven seas orange syrup stuff with vitamin C to be the best for me. I also like their "high strength" product.  I tried expensive brands with exotic extraction and purification processes for EPA and DHA and found them to be less effective than the relatively cheap Seven Seas product. The oil worked to reduce inflammations and acne dramatically. Helped with clarity of thought in combination with niacin but NOT taken at the same time where it seemed to reduce the flush.

salmon and seafood - Salmon and Tuna are pretty good. But nothing like the effects of the aforementioned cod liver oil.

sweet potato - ate quite a bit of this. I didn't discern any effects.

wobenzym - never tried it.
bromelain - never tried it.
papain - never tried it.
multi-enzyme@ nuzyme - benefitted digestion issues.
spinach - no discernible effect.
chocolate - helped with concentration but increased acne. Couldn't continue with "chocolate therapy" for that reason.

B3, B3, B6, B1, B12 - B3 (Niacin) and B6 have worked wonders but  the others don't do much for me when taken independently. I take the others at ~100-200% RDA levels (normally in a multi-vitamin) .

vitamin D - by itself, no effect. In cod liver oil I noticed an effect. Whether any of this could be attributed to Vit D, I don't know.

olive leaf extract - no effect.
saw palmetto - never tried it.

garlic - improved stomach issues. Improved energy levels and clarity of thought. Made my breath stink I'd certainly recommend POISers to give it a try.

krill oil - worked similar to my favorite orange syrup cod liver oil but at a multiple of the price. This was the only one of the more exotic fish oils that delivered a similar benefit to the cod liver oil product mentioned so I've considered using it more. I'm also interested in seeing if Astaxanthin delivers longer term benefits. The brand I used was superba and I plan on trying it again next month. 

vitamin C - works a treat at improving energy and mental clarity but you need to take it in very large quantities (several grams every day) AND avoid brands which have artificial sweeteners or colorings that can actual impede attentiveness. I'm talking about "sunset orange" colorings, aspartame etc. Do your homework.

zinc - worked in combination with magnesium and b6. Delivered modest improvements to stamina and focus by itself.

magnesium - similar to Zinc. Made me slightly calmer but that may have been a placebo effect.

zma - works for me BUT works best when taken at night rather than in the morning or during the day.

tripterygium wilfordil - never tried it.

zymnese - never tried it.

chlorella - take it with spirulina. Improves mental clarity and in combination with vitamin c (taken within 30 minutes of each other) I can literally feel my POIS symptoms clearing after an O.

lecithin - appears to have some benefit but only in combination with fish oils (or piracetam, see below)

folic acid - take it as part of a multi-vitamin but I noticed a benefit to energy levels and memory when I took it with vitamin C alone, without any other supplementation.

This highlights a general problem. Few people take one supplement by itself. Synergistic effects are likely as nutrients used in one biochemical reaction may cause depletions of others that are replenished by other supplementation. Ratios and complimentary supplementations appear important but are very difficult to capture in surveys.

spirulina - taken with Chlorella. These 2 together really give me a boost of energy and reduce the tension and fuzzy feeling that, for me, define POIS.

quercetin - never tried it.

Other things I've tried
piracetam - gives a very temporary lift if I don't take the other supplementations. Effects can last for over a day if I take ZMA, fish oils, niacin and lecithin. These effects include increased creativity and recollection of past events. Piracetam gave me hope that when we figure out the "cure" it can help POISers glue their brains back together. 

However, piracetam only gives the good and expected results for me when I'm feeling good from the other supplement regime I discussed here and with jferr. Without those supplements, it doesn't give me the boost that many users report.

Tyrosine - gives a short term but powerful boost of energy and focus. For example, I can treble (or more) my average tetris score after about 1g of tyrosine. It's definitely having an effect and I've seen several studies to back this up.

Onto the problems Effects fade if I try to take it every day and it makes me feel quite aggressive by the 3rd - 4th day.  It seemed so promising when I took it first and I still think it could be useful as part of a post O protein supplementation regimen. However, I feel I get enough of these proteins in my chlorella & spirulina.

taurine - similar to tyrosine, this gives a short term boost of cognition and energy. I found there's less long term fade and I may restart experimentation with this.

So that's a potted summary of about 5 years of treating my body as a chemistry lab. Anything to get over the dreaded POIS symptoms.

I know the "my body as a lab" feeling. Thanks for all the information you posted. The one that I KNOW definitely halfs the POIS recovery time is Zinc supplements of 15 - 30 mg daily. Most of my lab stuff centred around food allergies some years ago. My experimentation with Niacin is ongoing and i will post results when i have a few attempts with Niacin. I sometimes go for more than a week without an O just to replenish myself so it may be  a few weeks yet. Thanks for all the work people are putting into this, on here and the other forum 

[demografx]

badgerstripe wrote, " Thanks for all the work people are putting into this, on here and the other forum  "

And thank YOU, badgerstripe, for your terrific contributions!

Demo

[kurtosis]

Surveys often don't link the user to his vote, so this is a slight touch I'm going to give to ours. Of all the surveys that we will undertake, an important one will be a POIS profile per individual.

Later when we do other surveys, each individual will be linked to his answers so that we can always extract information relative to a certain profile.

The survey programs that are available (free) usually have a limited set of evaluation criteria and usually just say, "to this question 47.3% andswered 'yes' and 52.7% answered 'no', useful, but limited.

But once the database is available, we can use different programs to extract the same answers but related to a specific "user profile", "Individuals that suffer mostly physical symptoms don't respond to niacin, and those with cognitive problems do" for instance.

So it should be interesting.

That's a great point caveman. What format will the survey be published in? CSV file format works very well with most statistical analysis packages like minitab for example (or even the Excel stats stuff).
Would be interesting to do some hypothesis testing on the data.

[Quasar]

Not a problem, demografx. Thank you for the response. My bloodwork was as follows:
Name, Result, Reference.

Follicle Stimlating Hormone:  1.6mIU/mL, (1.3 - 19.3) Lower End

Jon, i remember my FSH hormone was also in the lower end!

Interesting, Quasar. Were you able to get the levels back to normal? And, If so, What did you to fix it?

I don't know yet. But i guess not. My Dr. didn't comment on it. I've found this:

"FSH is a key component in male fertility because it stimulates the growth of sperm. When a man has a high level of FSH, it means that the testicles are not producing enough of a hormone called inhibin, which keeps FSH levels in their normal range. This generally indicates that there has been a testicular failure, either a partial testicular failure or a full testicular failure. Treatment for elevated FSH levels in men, therefore, really requires treating the cause of the testicular failure, as opposed to actually treating the levels of FSH directly."

And this: http://www.livestrong.com/article/151903-reasons-for-a-low-fsh-in-males/

[B_Daniel]

that was very helpful, Kurtosis.  Thank you.  I agree that treatments sometimes work in combinations and have dependent factors and whatnot, but all I was getting at is imagine if we had that data you just provided, but for 50 members, compiled and presented in an easily digestible format.  It'd be amazing!  Sounds like the forum is headed in that direction, which is very, very exciting!  Thanks for your hard work Daveman. 

[mellivora]

Surveys often don't link the user to his vote, so this is a slight touch I'm going to give to ours.

Sounds fantastic Daveman, thanks.

That's a great point caveman.

This has to be my favourite typo! I'm sure no offence was intended :-)

[demografx]

Offense??? I thought he WAS a caveman!

: - )

[mellivora]

The other point I want to repeat is frozen semen can't trigger the immune reaction. So for a scientist it may help to identify what is the element in semen causing the Pois which is active in fresh semen but inactive in frozen semen.

That would be an interesting approach to trying to find the culprit B_Jim, thanks. However, unless you have the evidence of a research study on this, I think we should be cautious making such a black and white statement about the inability of frozen semen to trigger the immune reaction. I have looked on poiscenter forum and seen that Habibou self-administered an injection of frozen semen and didn't get a reaction (this does seem significant as it was 1:1 - i.e. not diluted - I WOULD NOT RECOMMEND ANYONE TRIES THIS!). However he did get a reaction with a 1:40000 diluted dose of fresh semen administered by a doctor. Vandermolen has reported being told by his docs that fresh semen is better (though has also said treatment with frozen works but more slowly).

I think we can't say frozen definitely doesn't work yet, as we don't have enough data or adequately refined techniques and controls in place, just that fresh semen does work and frozen may not. The way things are frozen might be important - eg. how fast/slow is the freezing, do the contents separate out at all somehow during the process etc).

However, if you have more evidence do let me know, I have only read Habibou's case (which I admit is significant!) and just a few other forum posts on this..

[daveman]

Surveys often don't link the user to his vote, so this is a slight touch I'm going to give to ours. Of all the surveys that we will undertake, an important one will be a POIS profile per individual.

Later when we do other surveys, each individual will be linked to his answers so that we can always extract information relative to a certain profile.

The survey programs that are available (free) usually have a limited set of evaluation criteria and usually just say, "to this question 47.3% andswered 'yes' and 52.7% answered 'no', useful, but limited.

But once the database is available, we can use different programs to extract the same answers but related to a specific "user profile", "Individuals that suffer mostly physical symptoms don't respond to niacin, and those with cognitive problems do" for instance.

So it should be interesting.

That's a great point caveman. What format will the survey be published in? CSV file format works very well with most statistical analysis packages like minitab for example (or even the Excel stats stuff).
Would be interesting to do some hypothesis testing on the data.

That's Daveman by the way []!

Yes it has CSV output, can be imported into excel etc. I usually don't do too much myself in that area, like to work directly on the database for WEB output.

But it's great if there are people like you available to run it through excel scripts or other analysis programs, all the more minds working on the possibilities.

The program has it's own WEB reporting tool, pretty basic, just says how the group responded. But I will be writing an interface to be able to do more extensive cross tabulation and extraction of more specific information (ej. treatment efficacy for instance referenced to specific POIS profiles ).

[daveman]

For the "auto-immune-sufferers" who have not result with supplemants like Niacin or with diet improvements, maybe they could try to wash and eliminate the semen just after orgasm. There is maybe a little chance to reduce symptoms.

The other point I want to repeat is frozen semen can't trigger the immune reaction. So for a scientist it may help to identify what is the element in semen causing the Pois which is active in fresh semen but inactive in frozen semen.

I have nothing new to say. 150mg of niacin don't give me flush reaction. Low (20-40mg) or average (50-150mg) dose of niacin can't stop my flu-like symptoms. Maybe it helps my cognitive symptoms.
But once again, I can strongly confirm that when I avoid or reduce flu-like symptoms during Day-0, I have few or less cogntive symptoms the days after (Day-1, Day-2....).

I'm really interested in your case B_Jim, and cases like yours where niacin doesn't work. You took the 150mg niacin on an empty stomach? Let's say at least 3 to 5 hours after any food? This is very important. Also without flush, also very much less likely to have any effect.

I read that those who most need niacin, require more. You need to find a dose that gives the flush (using of course the type of niacin that GIVES flush, there are kinds that don't). And you must assure not having eaten for at least 3 hours, if it is difficult for  you to get a flush, you should probably wait 5 hrs.

Don't give up right yet, I think it's important to finish the tests, especially on someone who hasn't had success. IF you finally manage to get a flush and still have bad POIS afterwards, then we would need to investigate what's going on in your case (and those who aren't relieved by niacin).

For those for which niacin works, it usually is VERY effective. So it must point to something. And then if we can see why on some it does not work, I think we would be getting very close to a breakthrough answer.

[Vincent M]

About my social anxiety and reduced cognitive function stemming from POIS:

Against my better judgement I've been on Venlafaxine (Effexor), an SNRI, for Social Anxiety for a week and 3 days now and it's only made me feel tired, weak, and zoned out and gave me some heart pains which I've never ever experienced before. Since I've already tried Prozac(which also just made me tired) and after spending a lot of time reading up on drug studies and user reports of SSRIs and SNRIs I wouldn't recommend them to anyone. My next approach will be to use Klonopin (a benzo that actually reduces my anxiety and seems to work for the majority of other people) and hopefully I can get some Adderall since I've read a lot of good user reports on it's ability to enhance cognitive energy and function over a short period of time. I would take both only 2 times a week at most to avoid developing a tolerance since tolerance develops within days or weeks in most of the reports I've read.

[lauracostis]

About my social anxiety and reduced cognitive function stemming from POIS:

Against my better judgement I've been on Venlafaxine (Effexor), an SNRI, for Social Anxiety for a week and 3 days now and it's only made me feel tired, weak, and zoned out and gave me some heart pains which I've never ever experienced before. Since I've already tried Prozac(which also just made me tired) and after spending a lot of time reading up on drug studies and user reports of SSRIs and SNRIs I wouldn't recommend them to anyone. My next approach will be to use Klonopin (a benzo that actually reduces my anxiety and seems to work for the majority of other people) and hopefully I can get some Adderall since I've read a lot of good user reports on it's ability to enhance cognitive energy and function over a short period of time. I would take both only 2 times a week at most to avoid developing a tolerance since tolerance develops within days or weeks in most of the reports I've read.

you should try a tricyclic antidepressant

[demografx]

After decades of testing tricyclics, SNRI's, SSRI's and the like, I find that ADHD stimulants now work best for me. I fought, resisted the suggestions, but when I complied I was very pleasantly surprised. Still am, about 6 years later!

[CertainlyPOIS]

The other point I want to repeat is frozen semen can't trigger the immune reaction. So for a scientist it may help to identify what is the element in semen causing the Pois which is active in fresh semen but inactive in frozen semen.

I think we can't say frozen definitely doesn't work yet, as we don't have enough data or adequately refined techniques and controls in place, just that fresh semen does work and frozen may not. The way things are frozen might be important - eg. how fast/slow is the freezing, do the contents separate out at all somehow during the process etc).

However, if you have more evidence do let me know, I have only read Habibou's case (which I admit is significant!) and just a few other forum posts on this..

If  you say skinprick, all in one word, it gets through.

Thanks, I understand my mistake  []

 I received an intradermal test from Dr. Nguyen and Dr. Bewtra (so did CCconfucius). The semen was not diluted at all. I froze the sample about a week before the test and thawed it in the fridge a few hours before the test and kept it cool on the way to the doctor's office. I believe keeping the sample fresh is important. Anyway, for treatment, the doctor may need to dilute the sample, but for my testing (and for CCconfucius) it wasn't.

evidence frozen semen still causes reaction.