[Starsky]

There is a under and overmethylation theory... Are POISers over or undermethyleted?

[dante88]

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?

[martin88]

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):

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.

[Stef]

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   




 

[demografx]

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

[kurtosis]

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.

[fidalgo]

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.

[Nightingale]

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!!!

[B_Daniel]

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!

[GoingCrazy]

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. 

[kurtosis]

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

[daveman]

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.

[meteo74]

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.

[demografx]

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!

[kurtosis]

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.

[observercenter]

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/

[martin88]

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.

[kurtosis]

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.?

[martin88]

Hi Kurtosis, at least I'm 100% sure that vitamin C is causing some anxiety (very severe if I persist) in my case, so there is definitely a reason. I was also reporting I have not always been like that, it took months after starting the supplement in high doses. I'm ok (or borderline) with 180mg/day + multivit/min. I feel good with one or two glass of orange juice daily and even feel the need to drink more of it after orgasm.
About the depletions I have read this before the internet, from a book written by a scientist from the CNRS (french national center for scientific research) but I know it can be wrong that's why I wrote "could deplete" (is it the conditionnal, not sure  with my english). I agree with you, a lot of studies are biased.
Empirically, magnesium is what was helping me the most with this side effect but taking it regularly was not enough so I had to reduce vitamin C.
I don't believe it's easy to make a diagnosis since blood levels can be normal even with a deficiency.
I never had any problem with GC (or you) reporting his success with vitamin C or with anything before. I'm glad he did it. I'm just reporting my own experience just in case it can help someone with the same issue.
Not aware of this I would have been forced to take a medication.

[nathan123]

Hi,  today I got my vitamin D level blood test.  My V D level is 2 whereas normal range is 30 to 70.  I am in severe deficient of Vit D. does Vit D has any link with auto immune diseases?