[martin88]

I'm just not ready yet for a lancet

I do believe it's rare (Disease is another question, but that's just terminology/semantics). Dr Waldinger, who specializes in sexuality medicine, only came across 5 cases of POIS in 5 years. And with all the physicians and healthcare professionals seen by this forum (I would guess in the hundreds) - - NOT ONE healthcare professional has had any idea what POIS is. And if it were more common, we would also have seen more than just ONE study (Dr. Waldinger's). But if you still doubt "rare" please tell me why.

I like your attitude when you say "not yet". This means you'll do it later. Very good idea to do this with an acupuncturist.

I don't know if it's a rare disease or not but :
Initially it was mentionned :
In a lot of religions, so it's not a new concept.
In "serious" medical books written by occidental MD, till 1980 and even later. As I said before I have one of these books where they say that all teenagers who have too much orgasms early in their life will destroy their nervous system.
In chinese medicine it's common (weakness after sex).
In some shows, movies you have allusions by actors.

Perhaps a lot of pois don't make the connection. I was like that for 5 years without realizing so it's possible that people don't realize for more than that. Some cases will think they can't change this, they are like that and that's all.

Other cases of pois who know the connection will think everybody is like that and that it's not a disease, it's simply normal. There is nothing to do.

Also I think a lot of cases of what they call "mental illness" are actually pois.

Another consideration is that usually pois begins very early in life before the first sexual experience. Pois causes mental effects (shyness, reserved, anxiety). People affected by this won't talk easily about their sexuality, they will never see a sexologist like Dr Waldinger.

The pois who will be able to talk will be classified as anxious  by their MD. They are but this could be avoided.

Since pois people are fatigued they won't be the ones who will participate in studies to decide if sexuality causes fatigue or not. I heard a joke in a one man show :
You see all the empty places in the auditorium? These are vegans who are still in the parking trying to remove their seat belts !

I hope to answer your question. Internet is a fantastic tool for all pois who want to stay anonymous.

[martin88]

Counterpoints, what does your doc think about your high cortisol (probably it's too soon for this question) ? Do you think it could be the meds you are taking ?

[demografx]

Martin, you make an excellent case for POIS being more common than it seems! I could relate to all the variations you mentioned at several different points in my life. Especially the time it takes to see a connection between orgasm and postorgasmic effects. That is why my memory earlier than 30 years ago doesn't register POIS: I was simply not attuned to looking for POIS. I know I had a lot of depression, and that could have come from POIS, but perhaps it didn't. Periods of poor concentration have been there as far back as I can remember and that may have been ADHD, but it could have been POIS!

I might add that denial played a big role with me. I never wanted to admit to myself that this (POIS) could be happening to me. For many years, I would think, "THIS time it (sex) will be safe." It never was.

[martin88]

About cortisol I would recommend if possible to do a saliva test and a blood test at the same time, so we'll be able to see the differences. If we want to make research by ourselves on this, the saliva test would be very useful(to make more tests and find what is really effective to decrease cortisol). For me it's not easy to make a test at the hospital, I have to wait 3 weeks to have an appointment with my doctor. Then it's an other full day for one cortisol test. In pois I'm usually stressed to go in places full of people for a test, so cortisol will perhaps be high because of this (am I wrong?)

About thyroid:
Girlwind, you probably know this, when you stimulate the thyroid you can increase the problem with the adrenals, that's what some sources (bad or not ?) are saying. Because of this you can stop your thyroid treatment even if it's needed.
I took ashwagandha a few weeks ago for the effect on HPA axis and my pois was aggravated, I can't explain why. Also It's an aphrodisiac. Specially for men with pois maybe it's not the best thing. This was a problem for me with ginseng.

[martin88]

Periods of poor concentration have been there as far back as I can remember and that may have been ADHD, but it could have been POIS!

POIS is certainly attacking our own weaknesses:
http://www.eschoolnews.com/news/top-news/index.cfm?i=35148&CFID=14657829&CFTOKEN=45799745
That stress drives changes in fingertip temperatures that appear to fluctuate differently than do those in non-ADHD patients

[girlwind]

About cortisol I would recommend if possible to do a saliva test and a blood test at the same time, so we'll be able to see the differences. If we want to make research by ourselves on this, the saliva test would be very useful(to make more tests and find what is really effective to decrease cortisol).

Girlwind, you probably know this, when you stimulate the thyroid you can increase the problem with the adrenals, that's what some sources (bad or not ?) are saying. Because of this you can stop your thyroid treatment even if it's needed.
About ashwagandha I took it a few weeks ago for the effect on HPA axis and my pois was aggravated, I can't explain why. Also It's an aphrodisiac. Specially for men with pois maybe it's not the best thing. This was a problem for me with ginseng.

I have no idea what blood test is good to test cortisol levels. (There is actually a lot of controversy about this.)
I have heard that there is a 24-hour urine test, which is used more commonly, and also a cortisol provocation test.
I just go with the saliva tests, because they are easy to do by one's self and the results have rang true for me.

Also, it could get really expensive to do so many tests--both saliva and blood, before and after POIS... that's a lot of
money. I have no insurance and have to pay out of pocket for all this, so I'm not willing to dish out the extra cash.

As for ASHWAGANDA,  I have been taking it for about two weeks and have experienced NO aphrodisiac effects
from it. It's an adaptogen (helps the body adapt to stress), and supports both the adrenals and thyroid. For me it's
been just as easy to take as Siberian Ginseng (Eleutherococcus senicosus) and Schizandra, which have had similar affects.

[martin88]

I have no idea what blood test is good to test cortisol levels. (There is actually a lot of controversy about this.)I have heard that there is a 24-hour urine test, which is used more commonly, and also a cortisol provocation test.I just go with the saliva tests, because they are easy to do by one's self and the results have rang true for me. Also, it could get really expensive to do so many tests--both saliva and blood, before and after POIS... that's a lot of money. I have no insurance and have to pay out of pocket for all this, so I'm not willing to dish out the extra cash. As for ASHWAGANDA,  I have been taking it for about two weeks and have experienced NO aphrodisiac effects from it. It's an adaptogen (helps the body adapt to stress), and supports both the adrenals and thyroid. For me it's been just as easy to take as Siberian Ginseng Eleutherococcus senicosus) and Schizandra, which have had similar affects.

Thanks for your answer! Yes it takes money to do research, unfortunately we'll always be confronted to this problem. Anyway I'm interested to do the cortisol test to see what's going on. Maybe I'll be able to have a better quality of life, which is a major problem for me.
For aphrodisiacs perhaps it's different for women. We don't have the same hormones. I can take siberian ginseng without problems but not korean ginseng.. I didn't try schizandra. I'm a bit desperate to find a solution for pois in supplements. I have to stop taking melissa because I feel very slow after a week. However it was a 50% help for sleeping. I'll take it again.
I'd like to try 5-htp or tryptophan but this is not encouraging :
http://www.cnn.com/HEALTH/9808/31/tryptophan/

[demografx]

Martin's quote from article: That stress drives changes in fingertip temperatures that appear to fluctuate differently than do those in non-ADHD patients

Martin, that's fascinating! I never saw anything written about my strange fingertip temperatures (which only happens in POIS)!

[demografx]

...it could get really expensive to do so many tests--both saliva and blood, before and after POIS... that's a lot of money. I have no insurance and have to pay out of pocket for all this, so I'm not willing to dish out the extra cash...

...Yes it takes money to do research, unfortunately we'll always be confronted to this problem...

My AIDS-scientist friend says that perhaps a university research group could get involved with us. And if they have affiliated testing laboratories, maybe we can get these tests done for free? I should check with some of the large universities near me.

Others here: feel free to do the same (contact your local university to see if they would be interested in investigating POIS).

[girlwind]

Thanks for your answer! Yes it takes money to do research, unfortunately we'll always be confronted to this problem. Anyway I'm interested to do the cortisol test to see what's going on. Maybe I'll be able to have a better quality of life, which is a major problem for me.
For aphrodisiacs perhaps it's different for women. We don't have the same hormones. I can take siberian ginseng without problems but not korean ginseng.. I didn't try schizandra. I'm a bit desperate to find a solution for pois in supplements. I have to stop taking melissa because I feel very slow after a week. However it was a 50% help for sleeping. I'll take it again.
I'd like to try 5-htp or tryptophan but this is not encouraging :
http://www.cnn.com/HEALTH/9808/31/tryptophan/

Anything that improves our quality of life is a good thing! I agree. If we can get someone to fund our testing, that
would be excellent.

In regard to the herbs: Siberian Ginseng is NOT AN OFFICIAL GINSENG. That's why they have actually begun to rename
it as ELEUTHERO ROOT, as in (Eleutherococcus senicosus). It is not in the same family as the other ginsengs, like Korean
Ginseng, which is much more stimulating and HOT, according to the TCM definition of the term. I can't take Korean
Ginseng, but I have taken a lot of Siberian Ginseng for months at a time without a problem.

Also, Schizandra, like Siberian G., is adaptogenic and has a similiar affect affect. I alternate btwn the two, because I
have found that if I do too much of one for a longer time, it becomes ineffective. Rotation seems to prevent that from
occurring. Of course, everyone is different, so I can't predict how someone else would feel while taking it.

Since you mentioned it, I have tried Melissa for a few days now, and it has no sedative effect on me at all. I wish it did.
But no such luck. Whereas L-Tryptophan, which I take regularly definitely does have a STRONG sedative effect. However,
when I take too much (over 1000 mg) it makes me feel spaced out and anxious the next day. I know the controversy about
contaminants in L-Tryp., but I am somewhat skeptical about that. The week after they took it off the market in the 90's,
there was a MAJOR PUSH by big pharma to advertise Prozac. As I recall, there was even a big blown-up picture of a Prozac
tablet that appeared on the cover of one of the major news magazines. (Coincidence--? I don't think so.) L-Tryp. was
probably a threat to the big drug cartels, having a somewhat similar effect and being cheaper and more readily available.
So banned it was! And now  it's deja vu all over again.  But there is one source I know that is supposedly the "cleanest"
source of L-Tryp.  Here's a link in case you're interested. http://organicpharmacy.org/products/L-Tryptophan/SKU:DRB126

[Counterpoints]

Demografx (and everyone else),

I will have a list of blood-test recommendations from the neurologist soon.  I strongly advise going to a physician (MD), and getting these tests ordered.  I would suggest not involving alternative practitioners (naturopaths, acupuncturists, etc.) at this stage. 

At present, I strongly advise you specifically ask that these are tested:
AM Cortisol
PM Cortisol
24 hr Urine Cortisol
Glucose Tolerance (4 hr)
ACTH
CRH
(At your discretion: Prolactin, and TSH).

You should get these tests on the same day (and it will take most of the day). Please take these tests while symptomatic.

I took a PM cortisol test, and the results were flagged. All of my other tests have been normal.  This definitely stood out.

High cortisol levels could very well be causing many of our POIS symptoms -- the symptoms of high cortisol parallel many of the symptoms we have complained about.  And the successful remedies (for some of us) seem to fit this hypothesis.  A beta blocker would likely decrease cortisol levels.  As would oxytocin and relora, as far as I know.

I don't want to promote hysteria.  I need to be further tested myself, and cortisol may not be the problem (and after all, our problems do vary somewhat from person to person).  But I think it is important enough to be tested for these things that it is worth strongly emphasizing.

[girlwind]

DEMOGRAFX & EVERYONE ELSE:  I strongly advise you to note the following:

1. I have LOW CORTISOL. Not High. And I definitely have POIS symptoms. (So I don't think we
     can conclude yet that POIS is caused by high cortisol.) My PM cortisol was the lowest of all.

2. Glucose tolerance testing requires drinking a highly sugared soda and eating nothing all day,
     while they draw your blood every several hours to test the glucose level. It's a GRUELING TEST to do.
     I did it once and was sick for almost two weeks afterwards. Fasting plasma glucose and fasting insulin tests
     (in my opinion) are far less painful options.

3. MD's are not the only ones qualified to order blood tests. Alternative practitioners are cheaper (and
     definitely more open to someone requesting tests out of the blue.) I oppose MD's being the only option.
     Also, you can save money by ordering the tests yourself at My Med Lab.com

4. TSH is worthless without Free T3 and Free T4. Only the Free T3 and Free T4 tests show how much
     thyroid hormone is actively circulating in your blood. Testing both thyroid and adrenals (cortisol) would
     be a good idea, as at least one of us has demonstrated some low thyroid.

5. I think it's good to check all the other hormones too: estrogen, testosterone, DHEA (and progesterone--
     for women). They are all hormones of the endocrine system.

[Counterpoints]

Girlwind, the research neurologist I talked with disagrees with you in regards to thyroid (he seemed to only care about TSH).

[demografx]

...I strongly advise going to a physician (MD), and getting these tests ordered.  I would suggest not involving alternative practitioners (naturopaths, acupuncturists, etc.) at this stage...

It appears that we have a philosophical split in the forum, MDs vs. alternatives/naturopaths.

Ultimately it's each person's decision how to test their bodies. Further, some people have financial and/or insurance issues.

One understanding I have (from girlwind) is that MD's don't typically test certain forms of thyroid interaction, and perhaps others.

And another understanding most of us have is that naturopaths and the like won't/don't subscribe to the pharma/drug Rx world.

Counterpoints, can you say why naturopaths/alternatives should be avoided for now?

I think opposing points of view should also be aired now.

As added input, it should be understood that, at this stage, of the 3 outside researchers we have tentatively engaged with the forum, 2 are MD's and 1 is a Ph.D in Biophysics, but my guess is that the latter leans heavily toward the Rx drug/pharma world because of his AIDS research and the medical firms he founded.

Thanks much, all!

[girlwind]

Girlwind, the research neurologist I talked with disagrees with you in regards to thyroid (he seemed to only care about TSH).

He's wrong. I am living proof of that, as are the other "estimated 26 million cases" of undiagnosed hypothyroid.

[Counterpoints]

Counterpoints, can you say why naturopaths/alternatives should be avoided for now?

I generally don't trust them over medical doctors, for good reasons.  I don't have time to engage in a debate with girlwind, or others, but here are some of my reasons.  I have no doubt that Chris, who runs this site, would be inclined to agree with me.

1) Generally medical doctors are more rigorously and scientifically educated.  A great deal of money and scientific rigor has gone into their training.  This type of background has proven itself with progress and predictive ability that is not even marginally matched by the alternatives.  Even the skeptics here, in an instant, would place more trust in a medical doctor than some alternative doctor, in an immediately life-threatening situation.  (Would you dial 911, or would you go to your acupuncturist?).  It is also more intellectually difficult to become a medical practicioner than an alternative.  And anyone can call themselves "Dr.", but without some kind of obvious standard, like an MD degree, it's hard to take it seriously.

2) There is some animosity towards doctors because they can be dismissive, especially of unknown conditions.  This can be frustrating, but it is also a reason to trust a real doctor in an urgent situation.  Usually they do not need to expand their practices.  There is not nearly the same degree of self-interest as there is with the alternatives, who are quite often inclined to fake understanding, in order to promote their living.

3) Because many of these alternative doctors are ignorant of western medicine, they have sometimes encouraged taking dangerous supplements, causing problems that western physicians have had to treat in emergency.

I could go on for a long time.  I know the arguments for the alternatives, and I generally think they are flaky.  I must repeat: I cannot, in good conscience, recommend, in any urgent or serious situation, that you see an alternative practitioner before seeing a physician.  I also recommend discussing the alternative's advise with a physician, after you have received it.

In the case of a blood-test, it's simple.  I know there are standards that will likely insure the results are reliable.  A doctor is also more likely to tell you which medications may affect the results of your test.  And the necessary expertise to interpret and follow-up on something like a cortisol test is extremely well established in the western profession.  Who came up with these tests in the first place?

Everyone can make their own choices for themselves, but these are my opinions.

[girlwind]

Do we have a theory yet that could link hypothyroid to POIS?

No, and that's not the point. I think there's many factors that go into POIS. Some could be hormonal,
endocrine related; and since the adrenals and thyroid are big players in the endocrine system, I think it's a
good idea to get both checked out as thoroughly as possible.

IN MY CASE there is definitely a connection between MY POIS symptoms and MY thyroid, something I would
have never known had I only tested TSH.

[Counterpoints]

Girlwind, the research neurologist I talked with disagrees with you in regards to thyroid (he seemed to only care about TSH).

He's wrong. I am living proof of that, as are the other "estimated 26 million cases" of undiagnosed hypothyroid.

Thanks for the suggestions... I will try and get free T3, T4 tests.

[girlwind]

It appears that we have a philosophical split in the forum, MDs vs. alternatives/naturopaths.

Ultimately it's each person's decision how to test their bodies. Further, some people have financial and/or insurance issues.

One understanding I have (from girlwind) is that MD's don't typically test certain forms of thyroid interaction, and perhaps others.

And another understanding most of us have is that naturopaths and the like won't/don't subscribe to the pharma/drug Rx world.

Counterpoints, can you say why naturopaths/alternatives should be avoided for now?

I think opposing points of view should also be aired now.

As added input, it should be understood that, at this stage, of the 3 outside researchers we have tentatively engaged with the forum, 2 are MD's and 1 is a Ph.D in Biophysics, but my guess is that the latter leans heavily toward the Rx drug/pharma world because of his AIDS research and the medical firms he founded.

Thanks much, all!

Yes we do obviously have a split, and I think it's up to each of us how we test our blood, spit and urine,
and who we go to see to help us interpret the results and help us find solutions.

For 30 years worth of CFS and POIS, no doctor has EVER given me any useful helpful remedies/cures for these
conditions. I met one who was actually a decent human being, and he told me he "had no idea what to do to help."
The others were either patronizing and abusive, or completely ignorant.

ALL of the progress I have made with my many health problems has been the result of finding answers ON MY
OWN through research and experimentation, and through conversations with other patients who are further along
on the path of recovery. When I need support and symptom relief I see alternative practitioners, because I know
that there is much more in the way of help and healing that they are able to offer me.

I hope that there is understanding of that, and that there is an inclusionary attitude towards those of us who seek to
find better health and POIS relief with safe natural remedies, like foods and herbs and supplements.And who save
medical intervention for the moments when there is a major medical emergency (trauma) that requires that.

[girlwind]

REITERATING WHY MD'S ARE NOT MY FAVORITE CHOICE (FROM MY POSTING BACK ON PAGE 38)

Consider the following when taking any "medical advice" from anyone, (whether they are licensed to kill or not):

"The JOURNAL of the AMERICAN MEDICAL ASSOCIATION (JAMA) Vol 284, No 4, July 26th 2000 article written by Dr Barbara
Starfield, MD, MPH, of the Johns Hopkins School of Hygiene and Public Health, shows that medical errors may be the third
leading cause of death in the United States.

The report apparently shows there are 2,000 deaths/year from unnecessary surgery; 7000 deaths/year from medication
errors in hospitals; 20,000 deaths/year from other errors in hospitals; 80,000 deaths/year from infections in hospitals;
106,000 deaths/year from non-error, adverse effects of medications - these total up to 225,000 deaths per year in
the US from iatrogenic causes which ranks these deaths as the # 3 killer."