[girlwind]

Okay, okay Demografx--When I say "libido" I mean both healthy available sexual energy AND post-orgasmic recuperative abilities...  Capish? Sometimes it just takes too much time to SPELL OUT ALL the details when you're in hurry to write-up a posting. Also, I think what is good for overall ENDOCRINE health will most likely be good for POIS. That's my story, and I'm sticking to it!   []

Okay, okay girlwind. I disagree (re endocrine - not proven, but Okay. []

Actually, Demografx: here's a question. So why haven't we all explored this endocrine issue more, on our
own? Since we haven't yet been able to get outside help, wouldn't it be a good idea for everyone to get some
concrete data (as in diagnostic tests) done to see what is off?

In MY case I had a BUNCH of endocrine imbalances: thyroid being the obvious worst; but also estrogen, one of cortisols,
and DHEA weren't great either. This is why I am fairly SURE my POIS is in fact endocrine related. And the more I read
about thyroid and adrenal exhaustion the more I am convinced of it. Check out this partial list of thyroid symptoms:
fatigue, depression, brain fog, low libido, constipation, weight gain, low body temp--feeling cold, weakness and tired-
ness, high cholesterol, brittle finger nails, easy bruising, muscle and joint aches, visual problems, lowered immunity
with more infections. A LOT OF THESE SYMPTOMS are complaints people have with POIS!

Anyway, endocrine balancing is where I'm headed. I know in my gut I'm on the right track.

[demografx]

...he (MD PhD) is planning a full fledged research investigation, which I think will probably start within the next two months.

Great news, Counterpoints.

[girlwind]

girlwind (or anyone else, please jump in), I have a question for you. Do you have any theory or knowledge if some of the components in Levitra (PDE5 inhibitors), which works extremely well for my POIS, has any similarity to some of the things we're exploring? (iodine, garlic, protein, etc.)? My guess is that it would probably take a chemist's background to know.

According to my nutritionist wizard friend, Levitra increases nitric oxide production. According to wikipedia:

"Nitric oxide, known as the 'endothelium-derived relaxing factor', or 'EDRF', is biosynthesised endogenously from
arginine and oxygen by various nitric oxide synthase (NOS) enzymes and by reduction of inorganic nitrate. The
endothelium (inner lining) of blood vessels use nitric oxide to signal the surrounding smooth muscle to relax,
thus resulting in vasodilation and increasing blood flow. Nitric oxide is highly reactive (having a lifetime of a few
seconds), yet diffuses freely across membranes. These attributes make nitric oxide ideal for a transient signal
molecule between adjacent cells and within cells.[8] The production of nitric oxide is elevated in populations living
at high-altitudes, which helps these people avoid hypoxia. Effects include blood vessel dilatation, neurotransmission
(see Gasotransmitters), modulation of the hair cycle, and penile erections."

[Counterpoints]

girlwind (or anyone else, please jump in), I have a question for you. Do you have any theory or knowledge if some of the components in Levitra (PDE5 inhibitors), which works extremely well for my POIS, has any similarity to some of the things we're exploring? (iodine, garlic, protein, etc.)? My guess is that it would probably take a chemist's background to know.

According to my nutritionist wizard friend, Levitra increases nitric oxide production. According to wikipedia:

"Nitric oxide, known as the 'endothelium-derived relaxing factor', or 'EDRF', is biosynthesised endogenously from
arginine and oxygen by various nitric oxide synthase (NOS) enzymes and by reduction of inorganic nitrate. The
endothelium (inner lining) of blood vessels use nitric oxide to signal the surrounding smooth muscle to relax,
thus resulting in vasodilation and increasing blood flow. Nitric oxide is highly reactive (having a lifetime of a few
seconds), yet diffuses freely across membranes. These attributes make nitric oxide ideal for a transient signal
molecule between adjacent cells and within cells.[8] The production of nitric oxide is elevated in populations living
at high-altitudes, which helps these people avoid hypoxia. Effects include blood vessel dilatation, neurotransmission
(see Gasotransmitters), modulation of the hair cycle, and penile erections."

This is something I mentioned in a previous post.  It's also worth noting the connection between this and imre1's potential heart condition.

[girlwind]

NOTICE:

I imagine many POIS sufferers read this forum without making any comments.  I hope you will find the information here useful, and I encourage you to contribute.  Most importantly, if you find something that helps you, or you are feeling better, PLEASE DO NOT JUST ABANDON THIS COMMUNITY WITHOUT SHARING THIS INFORMATION.  This is very self-centered, heartless behavior.

It would be a good thing if people shared what has helped them, but accusations will be turn off to others. I would cut
that last sentence, if I were you.

[Counterpoints]

NOTICE:

I imagine many POIS sufferers read this forum without making any comments.  I hope you will find the information here useful, and I encourage you to contribute.  Most importantly, if you find something that helps you, or you are feeling better, PLEASE DO NOT JUST ABANDON THIS COMMUNITY WITHOUT SHARING THIS INFORMATION.  This is very self-centered, heartless behavior.

It would be a good thing if people shared what has helped them, but accusations will be turn off to others. I would cut
that last sentence, if I were you.

Such suggestions, where you quote the post in question, are more appropriately made through private message.  I also stand by the claim that abandoning a situation where you could potentially save hundreds of lives is self-centered.  It's not an accusation.  I'm not saying anyone has done that.  To clarify, I also don't think this is something someone would do to be deliberately malicious.  The idea is likely to escape from any association, and nothing else is particularly considered.  But in doing so, you are potentially allowing hundreds of people to undergo unnecessary and excruciating agony for decades.  The opportunity to greatly help so many people is rare, and it shouldn't be wasted.  Let us get better with you -- and if you must leave, at least make some mention of what helped you before doing so.  This isn't meant to come across as harsh.  It's something I feel needs to be said. 

[demografx]

So why haven't we all explored this endocrine issue more, on our own?

girlwind, that's why I posted about Levitra and the endocrine system. Without an understanding that there is a relationship, why would I? Levitra has had the most incredibly dramatic, profound and positive effect on me.

...A LOT OF THESE SYMPTOMS are complaints people have with POIS!

I know you disagree with my previous psychiatrist, but he was convinced that my symptoms were that of CFS. Even if his understanding is wrong, as you pointed out, I'm sure you would agree that POIS shares characteristics with many other illnesses.

Anyway, endocrine balancing is where I'm headed. I know in my gut I'm on the right track.

girlwind, most of us here agreed wholeheartedly(including me) to get a research endocrinologist on board here at the POIS Forum. Please don't take my comments as discouragement! I simply don't know at this stage, and I must admit I'm very much influenced by my "earthshaking" experience of Levitra, and I would just like to know if there is ANY relationship between that and the endocrine system before I personally see what is "off". If I didn't have my experience (and the resultant questioning) I would be rushing to do the tests. BUT I DON'T SPEAK FOR OTHERS. Levitra, for example, is meant for older males  (50+) with ED problems. Not the majority of this Forum, I'm sure!!

[demografx]

Such suggestions, where you quote the post in question, are more appropriately made through private message.

I think criticisms of posts such as the above are much more appropriate in private message.

[girlwind]

So why haven't we all explored this endocrine issue more, on our own?

I know you disagree with my previous psychiatrist, but he was convinced that my symptoms were that of CFS. Even if his understanding is wrong, as you pointed out, I'm sure you would agree that POIS shares characteristics with many other illnesses.

"Dr. Dale Guyer estimates that more than 90 percent of his chronic fatigue syndrome patients also have an underlying
thyroid problem."

Dr. Jacob Teitelbaum, an expert in chronic fatigue syndrome, suggests that a major portion of the symptoms of CFS
are due to a poorly functioning glandular system. If you read his book From Fatigued to Fantastic, you'll see
how much emphasis he puts on healing the endocrine glands.

I think most illnesses put excessive strain on the endocrine system, particularly the adrenals and thyroid, so that's why they
share those characteristics in common. But don't take my word for it, read up on it yourself. There is A LOT of good info.
out there, as I'm learning, and I am definitely in hot pursuit of it.

[demografx]

girlwind, if something works for CFS, I'm not convinced it will work for POIS.

[girlwind]

girlwind, if something works for CFS, I'm not convinced it will work for POIS.

Okay then.

[demografx]

According to my nutritionist wizard friend, Levitra increases nitric oxide production. According to wikipedia:

"Nitric oxide, known as the 'endothelium-derived relaxing factor', or 'EDRF', is biosynthesised endogenously...

This is something I mentioned in a previous post.  It's also worth noting the connection between this and imre1's potential heart condition.

Thanks much, Counterpoints!

Thanks, girlwind, sorry I asked again I couldn't remember where to look for your previous post!

And what was the connection to Imre1's condition?

[demografx]

NOTICE:

I imagine many POIS sufferers read this forum without making any comments.  I hope you will find the information here useful, and I encourage you to contribute.  Most importantly, if you find something that helps you, or you are feeling better, PLEASE DO NOT JUST ABANDON THIS COMMUNITY WITHOUT SHARING THIS INFORMATION.  This is very self-centered, meaningless and heartless behavior.  It won't help you, and it could unnecessarily cost us decades of severe agony.

Thank you, Counterpoints.

Just a short add-on, I would suggest that if you are uncomfortable posting your successes but are willing to share the info, just send one of us a private message and we will post it under our name and write that it was "contributed by an anonymous source". Many thanks.

[John21 (OP)]

I can't imagine someone discovering something concrete and not reporting it, I don't see this as being a problem. At times you might not hear from me for a while as well, but I stay tuned and if I have anything to contribute you'll read it.

[demografx]

I can't imagine someone discovering something concrete and not reporting it, I don't see this as being a problem. At times you might not hear from me for a while as well, but I stay tuned and if I have anything to contribute you'll read it.

John, I shouldn't speak for Counterpoints, but I think he's referring to lurkers, not to the vocal part of POIS forum such as you. You have been a steady and great contributor.

I'm glad you spoke up just in case others are confused as well about this!

[rock27]

Hey all,

I have actually had my blood checked recently, when I was feeling bad from POIS. I checked almost all the hormones that were on the list. I did this myself cos my doctor didn't want to do any more research, since he considered it to be 'in the head'. (you have to know in the Netherlands it's very uncommon and little known to actually order your own tests; unlike in the US).

Results outside the 'normal' range: T3 (too low; like Girlwind). This had not been tested previously by my Doc (he only tested TSH and T4 and said: normal). I read that when low on T3, you can actually have the same symptoms as when your TSH and T4 are abnormal. My TSH and T4 were considered normal, but reading the posts of Girlwind I should elaborate on those, 'cos then TSH is too high. And values like cortisol, testosteron are considered normal, but is that really true? They may be normal for 80 years old, but are they for me?

I filed my results at: pois.olympe-network.com     Please all folks, post your story and research here as well. You can read the stories of fellow sufferers there as well. Also, this can be used for research. Counterpoints for example is meeting a research scientist October 23rd and he will take with him the stories and test results to ask for advise and raise awareness.

I am also trying the garlic diet for 2 months now and avoiding sugar. It alleviates the terror. Just like some herbs I am taking to raise cortisol ( was diagnosed kidney yang deficiency by a homeopathist).
I will get more tests done (like free T3)and post my results. Also I will go to find a specialist in hormones.

Thanks everyone for sharing experiences and possible cures! It's something I could only hope for 12 years back when I first was sent away from the doctor. Internet didn't exist then. Back then I didn't have any information at all what to do. And now, reading the posts, it's hard to think that, with so many people doing research, we wouldn't find a solution eventually.
 

[girlwind]

Hey all,

I have actually had my blood checked recently, when I was feeling bad from POIS. I checked almost all the hormones that were on the list. I did this myself cos my doctor didn't want to do any more research, since he considered it to be 'in the head'. (you have to know in the Netherlands it's very uncommon and little known to actually order your own tests; unlike in the US).

Results outside the 'normal' range: T3 (too low; like Girlwind). This had not been tested previously by my Doc (he only tested TSH and T4 and said: normal). I read that when low on T3, you can actually have the same symptoms as when your TSH and T4 are abnormal. My TSH and T4 were considered normal, but reading the posts of Girlwind I should elaborate on those, 'cos then TSH is too high. And values like cortisol, testosteron are considered normal, but is that really true? They may be normal for 80 years old, but are they for me?

Thank you rock27-- I'm glad someone besides me has taken an interest in hormone testing.
I hope your action inspires more people to do the same.

You see demografx--I"m not the only one here with a potential thyroid deficiency.

[Counterpoints]

Thanks so much for your post rock27! It is very helpful.

Also, to clarify, I wasn't accusing anyone of disappearing.  However, it is somewhat common for people to "run away" from all associations to a past illness when they have helped themselves, without thinking about it.  I wanted to emphasize the good such a person could do -- how much they could help so many people in great agony -- by providing some information about their recovery, before leaving.  

John, I think you and others have been extremely helpful and generous.  In fact, when imre1 felt he had treated his problems, and wanted to leave the forum, he first made a post about his solution. As a result, I have possibly saved my life with the same remedy.  I'm not completely recovered, but I am improving.

[girlwind]

Thanks Rock27. I will  make the tyroid test soon (TSH, T3 Free, T4 Free).

Study on garlic, proteins, hormones and adreanline.
http://jn.nutrition.org/cgi/content/full/131/8/2150

Wow! What a study! Thanks for posting this. I'm glad to see that there is actual research on the benefits of
garlic with a high protein diet. Too bad I'm not in need of testicular testosterone.  [] Plain old circulating
female testosterone will do for me.

[girlwind]

Just in case anyone wants to know, ZRT is the lab that I used for my saliva and blood spot testing.
I did the Comprehensive Female Profile 1. I think the Comprehensive Male Profile 1 is the equivalent for men,
with just two differences: the male profile does not include progesterone (PG) in its saliva tests, and adds a
PSA to its blood spot test.

http://www.zrtlab.com/Page.aspx?hid=410