[demografx]

PANTALOON: I ACCIDENTALLY DELETED YOUR BYLINE. HERE IS YOUR POST!

Hi All

Just a basic intro and a question:-

I was diagnosed with CFS ('mild' as I've managed to work full time). I've had the condition for around 16 years. I'd noticed that orgasm could significantly worsen my symptoms, but didn't see it as a primary cause until I started reading this site.

I decided to go non orgasmic for a while and to take Relora which seems to have a   very +ve effect on me and see what would happen. Been doing this now for about 3 months and it's been the most symptom free 3 months of my recent life.

So, just wanted to say thanks for the friendly advice and all.

Anyway onto the question:-
Do you guys get a lot of colds? I'm not talking about feeling flu-ey as a symptom of POIS, but good old fashioned colds?
Until I started on my regime, I almost never got them, maybe once every year or two and then they were very mild and very short in duration.
Now however, I'm on my second real stinker of a cold in less than two months.
Seems like my immune system has woken up and has gone for an early morning run.

Any thoughts on this?

Kind Regards to everyone.

Pantaloon

[demografx]

Pantaloon, welcome to the POIS thread of The Naked Science Forum!

Congratulations, Pantaloon, on your recent POIS-free experience, and thank you for reporting back to us about Relora!

I caught colds for years until I realized that I just need to "lay low" with the onset of POIS, i.e., keep the stress and physical exertion as low as possible. That did it for me, but with obvious consequences for my work and social life.

Here are some POIS forum resources which may be helpful:

Please see "B_Jim"'s POIS Forum Summary of All Cases, here as well as others on the Web:
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video: A first!

And filling out the POIS survey created by "Counterpoints" will enable you to share POIS information and details with others here. This will also enable us to work more easily with outside researchers by having more organized data available about us:
http://pois.olympe-network.com/

POIS Research Study

We have a copy of the first and only study on POIS by Dr. Marcel Waldinger,MD and Dr. David Schweitzer, MD.

If you want a copy (PDF), send "Pyropeach" a Private Message with your regular email address and he'll send you back the PDF.

To send a Private Message, click on "Messages" at the top of this page. At the Messages page, click on "New Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.

Remember to put a quote around the recipient's name, e.g., "pyropeach".

New York Times article,

January 20, 2009

Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse

[girlwind]

MY PERSONAL EXPERIENCE WITH THE INFO I'VE RECEIVED FROM MICHAEL8028.

Over the past several months Michael has become a personal acquaintance of mine. He has provided me with the
biggest wealth of information that I have encountered on ANY internet forum which pertains to hormonal issues.
(I have been a member of three other endocrine related forums, and I have to say that NO ONE ANYWHERE,
including on this forum, has been as generous and helpful to me with information and support as Michael
has been). I have followed through with much of what I have learned from him, in regard to both diagnostic hor-
monal testing and treatment of various endocrine deficiencies. And so far, what I have learned from him has
panned out  to be RIGHT ON TARGET for me. This isn't  my opinion, but my personal REAL LIFE EXPERIENCE that
I am talking about.

In fact, it was Michael's recommended tests for thyroid that led me to discover that I had hypothyroidism,
which is something that 17 DIFFERENT MEDICAL DOCTORS over a period of 25 years managed to completely
miss. Also the protocol that he suggested to me for hydrocortisone, (which he sent me a highly detailed and
referenced description of), has been working very effectively for me. I have been following through with the in-
cremental dosage increases over the past two weeks, am now up to 10 mg, and have not had ANY problems with
it. MY ENDOCRINOLOGIST AGREED that given my sensitivity to medications, Michael's suggested protocol was a
good way for me to go.

Also: My endocrinologist's office has done extensive research on blood vs. saliva testing for hormones, and
it is THEIR EXPERIENCE that BOTH ARE EQUALLY ACCURATE. In one of Michael's past postings, he recommen-
ded BOTH ZRT and QUEST labs. (The first is known for their saliva panels, the second for blood. His main point
was the importance of GETTING TESTED, so as to KNOW CONCRETELY which hormones are not at optimal levels.)

And yes OPTIMAL HORMONE LEVELS vs. NORMAL HORMONE LEVELS is another issue that Michael brought to my
attention, which MY ENDOCRINOLOGIST has also concurred with Michael on. Some of those alleged "NORMAL"
ranges are highly questionable and constantly debated by the so called experts, which has led many people with
endocrine disorder to be left undiagnosed and untreated for years if not decades. Most of us on this forum are
living proof of THAT!   http://holtorfmed.reachlocal.net/article_info.php?articles_id=7

In addition to my endocrinologist's vote of confidence regarding much of Michael's information for me, my
acupuncturist has also noticed some significant changes in both my "kidney yang and kidney yin pulses"--just
in the last 10 days since I began the HC protocol. This is very good news for me, as I have been her client since
1987, and have heard all too many times how "deficient" my kidney pulses can be.

What's more I had my first deliberate conscious orgasm two days ago and had zero POIS symptoms. I
went for a 3 mile walk afterwards, slept very well that night, and woke up rested the following day. I think the
HC regimen has proven to be a very good thing indeed! That is, of course, in addition to ALL the many other
supplements and dietary changes I have added over the past several months--for both thyroid and adrenal
support. Some of those changes were for the thyroid issue that I wouldn't haven't known about had it not
been for... you guessed it... Michael!

CONCLUSION: My BIG THANKS go out to Michael for giving the info I needed to uncover problems that had
been left undiagnosed (by medical doctors) for several decades, and to get me on the RIGHT TRACK for healing
them. Sometimes the help you need most comes from the LEAST expected place. Who would have thunk it that I
would be getting the best medical advice I've ever received from a body builder in Scotland! 

[demografx]

RE: MICHAEL

I've been accused privately of attacking Michael. This is not my desire. I simply want the forum to have balance, fairness, truth, and objectivity. Which means good and bad. I am sorry if anyone is deeply offended by this type of moderation!

This all started because I wanted my endocrinologist to incorporate some of Michael's findings into my treatment!

[demografx]

B_Jim, isn't this what my endo is saying? He never said "only blood tests are scientific". He just believes saliva is inaccurate.

Yes, that's true sorry. I feel a general reluctance about saliva test, not especially you endo. I will make both. Saliva test probably will be better next years.
I have to say another Pois case (non-flulike) confirmed to me his bloodtests show a clear cortisol deficiency and  his endocrino will give him hydrocortisone soon. He will keep me informed about the effect of hydrocortisone on his Pois symptoms. I have no doubt he will have a good improvement like Girlwind and Michael.
Welcome Pantaloon. How your Cfs has been diagnotised ?

Thanks, B_Jim. And because of this forum, I convinced my endo to test my cortisol March 3!

[underwater]

To Girlwind and Demo, may your good fortunes continue---
Perseverence and positive momentum in pursuing successful therapies is critical.
Let's hope that many approaches will now yield positive results.
Might there may be a link between CFS and POIS? Might there be a link between "specific" male sexual issues and POIS? Might there be a link between GAD and POIS? Autoallergic issues or external ones? etc. etc. etc.
At least there is one thing for sure; this forum has definitely provided important connections for people. And that is the most valuable thing.

[demografx]

To Girlwind and Demo, may your good fortunes continue---
Perseverence and positive momentum in pursuing successful therapies is critical.
Let's hope that many approaches will now yield positive results.
Might there may be a link between CFS and POIS? Might there be a link between "specific" male sexual issues and POIS? Might there be a link between GAD and POIS? Autoallergic issues or external ones? etc. etc. etc.
At least there is one thing for sure; this forum has definitely provided important connections for people. And that is the most valuable thing.

Many thanks, Underwater. This forum has been incredibly helpful to me and others. And I hope the spirit of diversity prevails and continues to be helpful to many people, including the many people who are silently reading as we hold forth and pontificate! []

[demografx]

POIS DIARY

I can't believe another day is starting POIS-free!!! Thank you everyone for being here!!!

[girlwind]

MICHAEL8028: REPLY TO HIS POSTED POIS CURE BY MY UNIVERSITY ENDOCRINOLOGIST.

"Most of the post is scientifically untenable. Saliva tests are very inaccurate. Unless I see real blood test results, done in a reputable lab, from this patient I'd ignore it. Sorry to be so dismissive but I've had experience with these false sirens before."

That's a very predictable opinion. Unfortunately you can't argue with RESULTS.

To the extent that they're believable.

To state that someone's post is "scientifically untenable," and to imply that they are not believable is the next
best thing to an attack. The real question is why would Michael's successful results with his health and with his
POIS symptoms feel like such a threat, that it would warrant such a public dismissal. I think it's an ugly thing
to do, especially on a forum where we are looking to find answers to a problem that has plagued so many of
us for so long. Sometimes successful people bring out the worst insecurities in others, who then feel a need
to blast them with criticism in order to prop themselves up. I really hate seeing that happen here.

[girlwind]

Michael's solution to his POIS and other health issues required a serious long term commitment to his health.
There was "no silver bullet" cure. Instead there was an ONGOING INVESTIGATION into ALL the ENDOCRINE
HORMONE levels, and a well thought out treatment plan to remedy ALL the imbalances. I think that the fact
that there was NO ONE THING that cured his POIS, and in fact MANY DIFFERENT things at different times in
different dosages, might be an overwhelming reality to have to face. For me it has been an arduous and costly,
but also very rewarding process. Having been ill for 30 years with conditions doctors have had no answers for
I can't begin to express the total RELIEF I feel right now, knowing that I am FINALLY on the right track.
My wish is that everyone else feel that relief, that you all find whatever it is you need to heal your POIS and other
related health conditions.  Best of luck to all of you. 

[CertainlyPOIS]

Am going to say this about the argument on micheal,
Micheal is not forcing anyone to do exactly what he did, however is actions are showing credibility. When both girlwind and demo are mentioning improvement by restoring balance the hormones that are out of whack.    
That is all micheal is suggesting to do, figure out where the balance is being tipped and bring that balance back to normal.            
The Fact that maybe some of his test were not scientific does not matter, He was probably forced to follow that route when The so called scientific world ignored and dismissed his problem as psychiatric problem.  

[Limejuice]

Lately it seems POIS suffers are finding cures for their type of POIS (I won't list names because the list is long).  This is great!!!

However, it seems that a particular type of POIS, almost stictly cognitive, no one has had any success.  This is the type that I have, which is similar to CounterPoints, John21, and CConfucius.  Why is this?

I'm currently taking 50mgs of synthetic thyriod hormone because my TSH was 6.0.  I'm also beginning to feel the effects after 3 weeks of medication, but I'm concerned because it doesn't 'feel' like its curing POIS.  I haven't released since taking the medication, so thats not my suspission of not working, but I'm still sensative to carbs, a light sleeper (sleeps gotten worst on the medication), and lack creativity (that I used to have) and social happiness when being around people.  I feel boring and lifeless.  Even while writing this post I feel emotionless.

Is anyone seeing improvements who has cognitive POIS?

[underwater]

Limejuice--
I think we are close. You have overwhelming cognitive problems. I have amped up, depressive/anxious problems. We know there are hormones and neurotransmitters involved. I have faith that if I can improve myself daily (without "O") and actually feel better and stronger and more alert, then I can take momentum with me to deal with POIS. I don't believe POIS exists alone; the biochemical problems are already with us, they just manifest themselves overwhelmingly in POIS. I think Girlwind and Demo are good examples of this i.e. different approaches to multiple conditions leading to, hopefully, a resolution of POIS along with those other conditions.

[Counterpoints]

Lately it seems POIS suffers are finding cures for their type of POIS (I won't list names because the list is long).  This is great!!!

However, it seems that a particular type of POIS, almost stictly cognitive, no one has had any success.  This is the type that I have, which is similar to CounterPoints, John21, and CConfucius.  Why is this?

I'm currently taking 50mgs of synthetic thyriod hormone because my TSH was 6.0.  I'm also beginning to feel the effects after 3 weeks of medication, but I'm concerned because it doesn't 'feel' like its curing POIS.  I haven't released since taking the medication, so thats not my suspission of not working, but I'm still sensative to carbs, a light sleeper (sleeps gotten worst on the medication), and lack creativity (that I used to have) and social happiness when being around people.  I feel boring and lifeless.  Even while writing this post I feel emotionless.

Is anyone seeing improvements who has cognitive POIS?

The only big step I've made is the result of my 24 hr urine cortisol test.  It was about 515 nmol/d (ref: 30-220 nmol/d). In the past, I had above reference cortisol blood tests, but the endo I saw didn't seem to care about them that much, just the urine test (which was ordered by a different doctor).

But my urine cortisol test (by standard protocols) is cause for an immediate MRI of the abdomen and pituitary. 

My TSH and T4 levels are healthy.  My T3 is above reference... but it didn't concern the endocrinologist I saw.

[demografx]

To state that someone's post is "scientifically untenable,"...

I started to respond, (the above quote is not mine) but when you Private Message me telling me that my moderation "SUCKS" and to not write back: conversation's over. But I wish you well. Thanks.

[demografx]

I don't believe POIS exists alone; the biochemical problems are already with us, they just manifest themselves overwhelmingly in POIS.

Underwater, although this makes perfect sense, it overwhelmingly feels like POIS is this isolated piece of machinery that never, never surfaces except upon orgasm. Indeed, the eerie feeling of POIS for me is absolutely unique. Although occasionally I will feel the dried fingertips, the basic emotional-cognitive-physical package of POIS never surfaces in my life elsewhere. I have heard this reported elsewhere.

I have faith that if I can improve myself daily (without "O") and actually feel better and stronger and more alert, then I can take momentum with me to deal with POIS...I think Girlwind and Demo are good examples of this i.e. different approaches to multiple conditions leading to, hopefully, a resolution of POIS along with those other conditions.

Underwater, I hope you don't think I'm being oppositional today! You know, one of those bad hair days, [] but I sincerely believe, and please don't take this as bragging, I finally found a CURE, not a self-amelioration track...to a direct cure for my POIS!: a testosterone and Levitra "cocktail".

The pieces of the puzzle have come together these past few days with a fully expected severe case of POIS (Triple "O", typically qualifying me for a hospital stay, a mental institution or both!). It didn't happen. Just like early last year when I "thought" I had a cure. Actually the pieces did come together nearly two years ago when I tried the treatments independently and then together, but didn't realize that they needed to work together!

I might be wrong. This might be yet another placebo. But I doubt it. I have well over 2 years experience with this now and it has gotten more and more obvious every day what happened and what it's like now. Part of the mystery was the depotestosterone I took previously: the T-injectable "spikes" - after a rush of testosterone in the system, it wears off. The patches deliver a steady stream to the system, mimicking the body's natural delivery of T.

This all started in 2002, when Dr. Waldinger's study came out. In yet another desperate attempt to cure POIS, I contacted a sexual research expert who was being interviewed on Larry King Live. He sent me to a well-known Virginia researcher who referred me to a researcher in Czechoslovakia. The Czech researcher believed testosterone would cure POIS. (I was desperate enough to fly to the Czech Republic). The first time, the injection worked miraculously. After that, it didn't seem to work anymore so I abandoned the venture. Fast forward to 2007, and you can read many of the boring posts about Levitra here:
http://www.google.com/search?hl=en&q=levitra+demografx+POIS+site%3Ahttp%3A%2F%2Fthenakedscientists.com&aq=f&oq=

I often say "75% cure" but the truth is: I can live with this.

People have watched me now here for 2 years and I wanted to give them what I hope is a conclusion to my 30+ year extremely painful saga of POIS. and hope for their own painful trials and tribulations.

I owe much of where I am to everyone here that I've been in contact with at this forum, including just reading, so thank you from the bottom of my heart!

[demografx]

...it seems that a particular type of POIS, almost stictly cognitive, no one has had any success.  This is the type that I have, which is similar to CounterPoints, John21, and CConfucius.  Why is this?

Hi, Limejuice. Although I'm not "strictly cognitive," much of my despair was over my mental sluggishness. The last few days have been an absolute delight with the word "clearheaded" running through my mind constantly. With a smile on my face.

My message of hope is that perhaps we're not all that different. If all I got out of my treatment was clearheadedness, I would still be grateful.

And if some of us are really that unique, we are still learning principles that hold across symptoms: e.g., when I first got to this forum I had no clue what an endocrinologist does.

And some would say I still don't []

[martin88]

Am going to say this about the argument on micheal,
Micheal is not forcing anyone to do exactly what he did, however is actions are showing credibility. When both girlwind and demo are mentioning improvement by restoring balance the hormones that are out of whack.    
That is all micheal is suggesting to do, figure out where the balance is being tipped and bring that balance back to normal.            
The Fact that maybe some of his test were not scientific does not matter, He was probably forced to follow that route when The so called scientific world ignored and dismissed his problem as psychiatric problem.  

Confucius, you're very right when you say "forced to follow that route". I think everyone here was forced to search for an alternative treatment at one time or another.
About one point of your post I just wanted to say that eventually it could be important to have accurate tests when you're planning all your treatment on this information, especially with hormones supplements.

[GoingCrazy]

hey guys, I've stayed abstinent for about a week and 3 days and I gotta say, about ten minutes ago I masturbated and usually I get intense anxiety and stuff, but right now I actually feel not too bad, just a little tired since its 1230 at night.  I don't know if I am cured, but I am going to say that the "waiting" technique is definitely working for me.  []

[GoingCrazy]

I just did it again lol... I feel pretty good, almost better than I had been feeling, no bad side effects.  This is a very weird illness, I would say I still have pois because I am not particularly certain I am cured.  I am just going to have sex a maximum of once per week.