[demografx]

P.S. from Dr G. to the above email:

"Thought I had an interested resident [medical student interested in studying POIS for our forum] - but he's not gotten back to me about doing research as we discussed."

VERY encouraging feedback! I was a little disappointed at first, thinking that he couldn't help at all, but apparently he's giving it the old college try! - demo

Never give up!

[Animus]

Hey Horizon,

Any TRT will eventually kill sperm count or at least lower it to the bottom by shutting down LH+FSH signals.Even when one comes off TRT after being on long enough to shut down natural production of T, LH+FSH and sperm count will still be zero or near zero.

I showed the posted info above to my esteemed endocrinologist. Here's what he had to say:

"[Demo], Sperm counts go down when people are on testosterone, and may take 3 months to return to normal when men are interested in impregnating their mates. Semen volume (most of it from the glands around the prostate) remain good.
Supraphysiologic doses - like those taken by bodybuilders - may result in more long lasting or permanent decreases in sperm counts. You are taking a normal replacement dose so do not worry.

Dr. G, MD "

that's a good clarification.

[Animus]

We've got to take steps ON OUR OWN.

Thank you very much, horizon, for this VERY important, sober reminder of the reality of POIS for all of us!!

We all need to roll our sleeves up and get in the trenches and get our hands dirty if we want results NOW.

That means outreach, phone calls, emails...communication with the-outside-medical-world-that-doesn't-understand-POIS! Ever hear the expression, "the squeaky wheel gets the grease"? It means those who scream loudest, longest, and shriekiest get the [medical] attention they need.

Let's think of ourselves as aliens from another galaxy. How do we communicate with these stupid earthlings?  []

I agree completely.

[demografx]

The Orphan Drug Act (ODA) - 2 interesting links:

ODA: it's implementation and impact -
http://oig.hhs.gov/oei/reports/oei-09-00-00380.pdf

ODA in wikipedia -
http://en.wikipedia.org/wiki/Orphan_drug

[demografx]

Animus, thanks for your vote of support on my Operation Bootstrap soapbox above  []

[demografx]

My OUT-OF-POIS test results. (Feeling well, 10 days after an N.E)

Serum Testosterone              27.6 nmol/L (8.0 - 30.0)
Serum Sex Hormone Binding Glob  52 nmol/L (13-71)
Serum TSH level                 1.2 miu/L (0.20-6.00)
Serum free T4 level            17.5 pmol/L (10.0-25.0)
Prostate Specific Antigen      1.00 ug/L (<3.00)
Serum FSH level                4.3 iu/L (1.0-9.0)
Serum prolactin level          149 mu/L (<550)


It's no surprise to me that everything is in range since I was feeling good.
However, I was expecting T to be low/normal say around 10-14 nmol/L.
By being 27.6 nmol/L out-of-pois, I am ruling out TRT for me as an option even for 1 emergency patch on Day Zero. Reasons-
1) I might push it too high when out of pois
2) I cant imagine theres is such a catastrophic drop in T for it to be out of range in POIS.
3) Wont be able to get hold of it anyway (no-one will prescribe it).

I'd be surprised if the doctor I saw will administrate another set of results of the same for In pois. However, I may pay for an individual TSH level test IN Pois. This may fall too low In Pois. And despite what I said I may pay for an individual T test In Pois too.
I am thinking of getting Norepinephrine tested too. and testing progesterone levels too.
Trying Progesterone pills (like Limejuice) may be an interesting experiment or beta-blocker pills too.

Horizon, many thanks for this teriffic reporting!

[demografx]

Would anyone else on this forum be interested in a POIS conference?
I know I would be willing to travel from my city of San Francisco to another city in Europe or USA- wherever it makes the most sense. I think a conference could substantially move our cause forward.

good idea.

But I think the most pressing thing to get is a graph done of how hormones, catecholamines etc rise and fall before an after an orgasm for POIS sufferers compared to a couple of Non-POIS "normal" people.

This would mean a week of blood tests
- Day before orgasm (well out-of-pois)
- During say 30min of arousal (before ejaculation)
- 1min after orgasm
- 1st day after orgasm
- 2nd day after orgasm
- 3rd day after orgasm
- 4th day after orgasm
- 5th day after orgasm

If you had say
2 NON-pois volunteers(graphs for NON-pois maybe exist already)
5-7 POIS volunteers

+ tests for say 15-25 chemicals (hormones (P,T etc)/catecholamines etc.)

EXAMPLES (Total+Free/Bio Testosterone; LH+FSH  (Follicle Stimulating Hormone) (Luteinizing Hormone), Estradiol (E2); SHBG SEX HORMONE GLOBULIN BINDING; Prolactin; DHEA; Cortisol; IGF-1; Progesterone; DHT; TSH Thyroid-Stimulating Hormone, Free T3, Free T4, Reverse T3; HGH human growth hormone; PSA and CRP, Adrenaline, norepinephrine)

We figure out how much it would cost,
then figure out the cheapest way of getting the results
8 blood tests x about 7 people = ??

would it cost too much???

Maybe NORD, or universities, students, laboratory testers, or private companys, or hospitals could "cut us a deal"
maybe Marnia Robertson knows someone??

We then could do our own analysis from the graph...
or go on and find some people analyse the results...

We've got to take steps ON OUR OWN.
On a positive note, we have the advantage of knowing EXACTLY when and where and how long our illness occurs.

Most health problems like CFS, Epilesy, asthma etc  dont have this advantage.
We must use it to our advantage in finding the answers!

Excellent!! I showed to Marnia Robinson, now waiting to hear back.

[horizon]

My OUT-OF-POIS test results. (Feeling well, 10 days after an N.E)

Serum Testosterone              27.6 nmol/L (8.0 - 30.0)
Serum Sex Hormone Binding Glob  52 nmol/L (13-71)
Serum TSH level                 1.2 miu/L (0.20-6.00)
Serum free T4 level            17.5 pmol/L (10.0-25.0)
Prostate Specific Antigen      1.00 ug/L (<3.00)
Serum FSH level                4.3 iu/L (1.0-9.0)
Serum prolactin level          149 mu/L (<550)

Now it would appear you have high testosterone from looking at your total
test result but in fact you do not have high "useable" testosterone.

Look at your very high SHBG reading which binds testosterone making it
inactive/unavailable for the body to make use of it.

According to this chart you have a SHBG reading of a 75-84 yr old male.
Im guessing your more of a younger chap?

High SHBG+ High E2 would make all the testosterone in the world unusable, sitting
there at waste.

Dave23,
thanks so much for that info, you're the man,
yes im 34, from uk

Bit worrying about the high SHBG (and possibly high E2).
I'll ask the doctor about it after a scan due.

Seems I need these further tests:
OUT-OF-POIS
Estradiol (E2);
Albumin Total+Free/Bio Testosterone
Progesterone
LH Luteinizing Hormone
DHEA
HGH human growth hormone
DHT
Free T3,
Reverse T3;

Norepinephrine
Adrenaline
Dopamine
serotonin
GABA

IN POIS
Serum Testosterone             
Serum Sex Hormone Binding Glob 
Serum TSH level           
Progesterone
Estradiol (E2);
Albumin Total+Free/Bio Testosterone


What do you think? Any more tests(or less)?
I dont know what the doctor will say/react?

Any ideas on what the treatment might be for high SHBG?
(obviously I'll seek lots of further GP advice so i'll take any opinion from you guys in the good nature it would be intended!)

Is there a related hormone that tends to go down, if SHBG goes up?
Many thanks to you all

[demografx]

Maybe NORD, or universities, students, laboratory testers, or private companys, or hospitals could "cut us a deal"
maybe Marnia Robinson knows someone??

Marnia Robinson wrote back, saying, "I know no one other than those I've already suggested, but I do think [the forum] may want to know what part of the hold-up is":
 
"Forbidden Sex Research: The Orgasm Cycle "
http://www.psychologytoday.com/blog/cupids-poisoned-arrow/201005/forbidden-sex-research-the-orgasm-cycle

[demografx]

Is anyone here - or do you know of anyone - skilled in writing grants?

[Limejuice]

Quoted for truth!

We've got to take steps ON OUR OWN.

Thank you very much, horizon, for this VERY important, sober reminder of the reality of POIS for all of us!!

We all need to roll our sleeves up and get in the trenches and get our hands dirty if we want results NOW.

That means outreach, phone calls, emails...communication with the-outside-medical-world-that-doesn't-understand-POIS! Ever hear the expression, "the squeaky wheel gets the grease"? It means those who scream loudest, longest, and shriekiest get the [medical] attention they need.

Let's think of ourselves as aliens from another galaxy. How do we communicate with these stupid earthlings?  []

[demografx]

NORD (National Organization for Rare Disorders) Update

Just had a lengthy, very positive phone conversation with Stefanie at NORD, who is definitely a champion for our cause!

I lamented the large pharmaceuticals' lack of interest in "small potatoes" (treating disorders that do not appear to be a major potential revenue stream, i.e., disorders which do not have large numbers of sufferers) like POIS.

Her reply was surprising. She brought to my attention the Orphan Drug Act, of 1983, with significant amendments since then, that encourages pharmaceutical firms with financial incentives to find treatments for rare disorders. (Like POIS!) Those firms who undertake medical research for rare disorders are given major tax incentives and exclusivity on patents for 7 years.

Even large organizations such as Pfizer and Bayer have already started Rare Disorders Units! And many smaller ones such as Genzyme (a _larger_ "small" pharma) are well underway with this type of research.

Stephanie is also sending us a list of a few medical clinics that specialize in Sexual Medicine.

Very encouraging news! Thanks much, Stefanie.

From Stefanie today:

" Hi [demo],

Thank you for posting such a nice message!

I will do a search for some reputable sexual medicine centers and send you the links. In turn, you and your group members should can then feel free to contact them to try to inspire some interest in POIS.

As I mentioned by phone, I do believe that POIS is likely to be a disorder with a spectrum--from mild *(think Howard Stern) to very severe and debilitating.  I think that viewing it in that framework may help to cast the researcher net a bit broader.

*Howard Stern falls dead asleep after sex, 'un-wake-up-able' : - ) - demo


Sincerely,

Stefanie "

[demografx]

Stefanie makes an excellent - and exciting -  point - and so does Marnia Robinson - that POIS is simply at the extreme end of the postorgasmic spectrum. Recognizing that Postorgasmic difficulties are so common makes it easier for us to find attention and thus a cure for POIS!

[horizon]

Today, I wrote to:

The Pituitary Society
American Association of Clinical Endocrinologists
American Society for Reproductive Medicine
American Society of Andrology
Society for the Study of Reproduction
The Endocrine Society
The Association of Program Directors in Endocrinology, Diabetes and Metabolism

http://www.endo-society.org/about/other/fellow.cfm

I really just explained what POIS was and whether they had a list of universities which study hormones or research places, or know people who may help.

(...The Americans owe me one anyway, since they scored a last minute goal making us having to play Germany in the world cup!... [!]...)

[horizon]

This is interesting!!
http://www.dailymail.co.uk/health/article-338126/Why-men-fall-asleep-sex.html
I'LL TRY AND EMAIL THIS RESEARCHER.

"The blood rush after climax depletes the muscles of energy-producing glycogen, leaving men feeling physically drained."

Has this theory been discussed on the forum??
Maybe the cure involves Glycogen???

This interesting
http://news.softpedia.com/news/Which-Are-the-Health-Benefits-of-the-Sex-Orgasm-53718.shtml

But sex also boosts our body's senses, at least the smell. After the orgasm, a rise of the hormone prolactin occurs inside your body. This chemical makes the brain's stem cells to grow new neurons in the olfactory bulb, where smell is formed, increasing a person's olfactory abilities.

I have terrible sinus problems in POIS, poor sense of smell in POIS!
Could there be a problem with our "olfactory"
Could the cure in involve testing and solving our "olfactory"
Maybe there's brain surgery/technology already available for this!!!

LOW TESTOSTERONE AND POOR SMELL MAY EQUAL KALLMANNS SYNDROME FOR SOME POIS SUFFERERS.

Sex improves blood circulation, beneficial especially for the brain, due to increased heart rate and deep breathing. Sexual activity decreases the risk of getting cold and flu. Those who have 1-2 intercourses weekly present 30 % greater amounts of the antibody immunoglobulin A, an immune system's booster.

Has anyone tested immunoglobulin A??
Maybe the answer is immunoglobulin A??

Glycogen, Stem cells/neurons in the olfactory bulb, Immunoglobulin A
3 important avenues I think.

[Dave23]

Dave23,
thanks so much for that info, you're the man,
yes im 34, from uk

Bit worrying about the high SHBG (and possibly high E2).
I'll ask the doctor about it after a scan due.

Seems I need these further tests:
OUT-OF-POIS
Estradiol (E2);
Albumin Total+Free/Bio Testosterone
Progesterone
LH Luteinizing Hormone
DHEA
HGH human growth hormone
DHT
Free T3,
Reverse T3;

Norepinephrine
Adrenaline
Dopamine
serotonin
GABA

IN POIS
Serum Testosterone             
Serum Sex Hormone Binding Glob 
Serum TSH level           
Progesterone
Estradiol (E2);
Albumin Total+Free/Bio Testosterone


What do you think? Any more tests(or less)?
I dont know what the doctor will say/react?

Any ideas on what the treatment might be for high SHBG?
(obviously I'll seek lots of further GP advice so i'll take any opinion from you guys in the good nature it would be intended!)

Is there a related hormone that tends to go down, if SHBG goes up?
Many thanks to you all

Hey Horizon,

Your very welcome, hopefully this is a step to you finding
what can help your own POIS.

Awesome, where abouts in Uk you from? Im up in Glasgow
Agreed with your furthur list of testing. The free/bio testosterone
will be important one as the free/bio test reading i calculated for you
was just an estimate based on a normal level of Albumin.

Perfect. In pois testing should show much lower total test levels
according to that data i provided in previous post. Another
thing is testosterone lowers SHBG so if your total testosterone does
turn out lower during POIS symptoms then SHBG would be even higher
during POIS mode and thus causing even less free/bioavalable testosterone.

I think thats a great start for now .. the fact that your doc in the Uk
will even test these hormones is fantastic as I had no luck with several doctors
and even with Urologists and an Endocrinologist.


If your doc wont go on with your testing then you could back it up  by providing scientific studies of
pubmed, ncbi etc Its all there, plenty of studies just need to search for it.

Last resort is zrtlab tests done at home, better than being in the dark.


Some drugs to reduce high SHBG are :

Danazol
Stonozolol, Winstrol, Winny

Dont touch them as all have major side effects. Not worth it at all.

A herb named Nettle root "extract" with little if any side effects
has a few studies proven to lower SHBG
but doesnt work for everyone.


Heres a few things that may interest you on SHBG and how it relates
to other hormones and vice versa :

The hormone with the strongest effect on SHBG is insulin.
If one has low SHBG its a sign for insulin resistance and if one has
high SHBG it could be a sign low insulin.


SHBG is made in the liver in response to levels of many hormones:
1. Increasing Testosterone reduces SHBG
2. Increasing DHT lowers SHBG
3. Increasing DHEA lowers SHBG
4. Increasing Growth Hormone lowers SHBG
5. Increasing Insulin lowers SHBG
6. Increasing Estrogen/Estradiol increases SHBG
7. Increasing Thyroid Hormone increases SHBG


High SHBG is associated with cirrhosis. Ask your doc for liver enyzmes testing
he will do this np as its a very standard test.

Think of high SHBG as an indicator for an imbalance elsewhere like a sign if
you will. For example it may be low Dhea, low Gh, high E2 or liver issues
causing the high SHBG and by fixing these SHBG should lower itself.



Heres a  couple studies that prove nettle root extract lowers SHBG:


-----------------------------------------------------------------------------


Nettle root extracts have been extensively studied in human clinical trials
as a treatment for symptoms of benign prostatic hyperplasia (BPH).
These extracts have been shown to help relieve symptoms compared
to placebo both by themselves and when combined with other herbal medicines.[7]

Because it contains 3,4-divanillyltetrahydrofuran, certain extracts
of the nettle are used by bodybuilders in an effort to increase
free testosterone by occupying sex-hormone binding globulin[8]

7# ^ Lopatkin N, Sivkov A, Walther C, Schlafke S, Medvedev A, Avdeichuk J, Golubev G, Melnik K, Elenberger N, Engelmann U. Long-term efficacy and safety of a combination of sabal and urtica extract for lower urinary tract symptoms: a placebo-controlled, double-blind, multi-center trial. World Journal of Urology. 2005 June 1
8# ^ Sch�ttner M, Gansser D, Spiteller G. Interaction of lignans with human sex hormone binding globulin (SHBG). " Z Naturforsch [C]". 1997 Nov�Dec;52(11�12):834�43.
---------------------------------------------------------------------------

http://www.ncbi.nlm.nih.gov/pubmed/9434605 [nofollow]
 

[daveman]

Maybe NORD, or universities, students, laboratory testers, or private companys, or hospitals could "cut us a deal"
maybe Marnia Robinson knows someone??

Marnia Robinson wrote back, saying, "I know no one other than those I've already suggested, but I do think [the forum] may want to know what part of the hold-up is":
 
"Forbidden Sex Research: The Orgasm Cycle "
http://www.psychologytoday.com/blog/cupids-poisoned-arrow/201005/forbidden-sex-research-the-orgasm-cycle

All I can say is GAWD!

But i can go buy a gun!

What a world!

[demografx]

Today, I wrote to:

The Pituitary Society
American Association of Clinical Endocrinologists
American Society for Reproductive Medicine
American Society of Andrology
Society for the Study of Reproduction
The Endocrine Society
The Association of Program Directors in Endocrinology, Diabetes and Metabolism

http://www.endo-society.org/about/other/fellow.cfm

I really just explained what POIS was and whether they had a list of universities which study hormones or research places, or know people who may help.

(...The Americans owe me one anyway, since they scored a last minute goal making us having to play Germany in the world cup!... [!]...)

Horizon, fantastic! Thank you!!

       

[demografx]

Maybe NORD, or universities, students, laboratory testers, or private companies, or hospitals could "cut us a deal"
maybe Marnia Robinson knows someone??

Marnia Robinson wrote back, saying, "I know no one other than those I've already suggested, but I do think [the forum] may want to know what part of the hold-up is":
 
"Forbidden Sex Research: The Orgasm Cycle "
http://www.psychologytoday.com/blog/cupids-poisoned-arrow/201005/forbidden-sex-research-the-orgasm-cycle

All I can say is GAWD!

But i can go buy a gun!

What a world!

Daveman, don't buy the gun. Put the funds to better use, like our paying a medical intern. NORD has a different perspective. Many, many people outside the POIS community want to make the problem go away. Howard Stern is not happy falling dead asleep after sex, and neither are millions - perhaps billions! - of other people happy with the outcome (no pun intended) of orgasm.

And many others (like many of us here) simply haven't yet connected the dots that link symptoms to sex. So we'll teach 'em.

We'll get this thing resolved! We might just have to bump heads with a few naysayers along the way!  []

[demografx]

Is anyone here - or do you know of anyone - skilled in writing grants?