Post Orgasmic Illness Syndrome (POIS)

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1800 on: 01/11/2008 04:32:01 »
Demografx, it's good to have friends who are also researchers! Thanks a lot for your commitment to find a cure for pois for all of us. With Dr Waldinger, and the recent other people you were able to contact we feel less alone now. I hope we'll always grow in this direction. I understand you about the tests with lancets, I suppose it's normal because we all have our phobias, specially me, and perhaps all of us because of pois. Also I know that a lot of people have this blood/needle phobia.
In a last attempt, just in case, here are two videos about lancets. The first is explaining how quick it is. The second which is not with the lancing device, you'll understand why, is showing the size of the needle.
http://www.youtube.com/watch?v=g9e1PysysWI&feature=related
http://www.youtube.com/watch?v=_zE12-4fVn8
I hope it will help a little bit.
I'll read about IL6 for the first time. I'm not sure we have a rare disease, it's very hard to say.  



« Last Edit: 01/11/2008 04:38:55 by martin88 »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1801 on: 01/11/2008 04:45:07 »
Demografx, it's good to have friends who are also researchers! Thanks a lot for your commitment to find a cure for pois for all of us. With Dr Waldinger, and the recent other people you were able to contact we feel less alone now. I hope we'll always grow in this direction. I understand you about the tests with lancets, I suppose it's normal because we all have our phobias, specially me, and perhaps all of us because of pois. Also I know that a lot of people have this blood/needle phobia.
In a last attempt, just in case, here are two videos about lancets. The first is explaining how quick it is. The second which is not with the lancing device, you'll understand why, is showing the size of the needle.
http://www.youtube.com/watch?v=g9e1PysysWI&feature=related
http://www.youtube.com/watch?v=_zE12-4fVn8
I hope it will help a little bit.
I'll read about IL6 for the first time. I'm not sure if we have a rare disease or not it's very hard to say.  

Thanks very much, Martin! It has taken me YEARS to get over the phobia of even a NURSE drawing blood! I'm just not ready yet for a lancet, so thanks for NOT laughing!

And thanks for reading on IL-6.

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 appreciate your compliments about aligning with researchers. It's been slow moving, though.

Counterpoints should also be thanked for helping to move the outside-professionals idea, with his proactive searching people who understand POIS.

Girlwind has been very helpful in getting the alternate therapies better understood, including laboratory testing.

Now.....let's CURE POIS in 2009!

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1802 on: 01/11/2008 05:25:04 »
I'm not sure if this registered...

My blood cortisol levels were tested, and they were high. This can be dangerous, and could very possibly be a result of POIS.  It is something we had suspected beforehand.  It was a test the research neurologist I saw on the 23rd ordered.

To everyone on this forum: I cannot advise you more strongly to go and get a cortisol blood test as soon as possible. (e.g. on monday).  Get an AM and PM test.  Try and do it while symptomatic.

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1803 on: 01/11/2008 14:51:45 »
My cortisol levels have been CHRONICALLY LOW, for many years. Especially my morning cortisol.
The last series of 4 (salivary) cortisol tests that I had in September (which included morning, noon, afternoon
and evening cortisol samples) were much more "normal" than I've ever had. This last time, most of my levels
were in the normal range. My morning sample was in low normal--could be a little better. But only my evening
cortisol was clearly out of range and too low.

I still need to continue addressing the adrenal/cortisol issue, espcially given the recent new findings that my
thyroid is in sub-normal range. But I am pleased to see that the efforts I have made to improve my adrenal
functioning have paid off a bit.I attribute this improvement to the supplements that I've been taking each day
for adrenal support, which has included: 3-5 grams B5, 5 grams Vitamin C, 25-50 mg. DHEA, 6-8 capsules
of either Imperial Siberian Ginseng, or Planetary Formulas Schizandra Adrenal Support, 6 tablets maca,
and 6 capsules Ashwaganda (newly added).

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1804 on: 01/11/2008 14:52:17 »
I'm not sure if this registered...

My blood cortisol levels were tested, and they were high. This can be dangerous, and could very possibly be a result of POIS.  It is something we had suspected beforehand.  It was a test the research neurologist I saw on the 23rd ordered.

To everyone on this forum: I cannot advise you more strongly to go and get a cortisol blood test as soon as possible. (e.g. on monday).  Get an AM and PM test.  Try and do it while symptomatic.


I just had a standard blood test (which I can't read, except for GP's comment, "all looks good") Would this typically test blood cortisol? I have 2 pages of results, what should I look for? Thanx!

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1805 on: 01/11/2008 14:55:58 »
Girlwind, can an accupuncturist or other naturalist draw my blood for these tests?

Beating a dead horse,
Demografx

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1806 on: 01/11/2008 14:58:36 »
I just had a standard blood test (which I can't read, except for GP's comment, "all looks good") Would this typically test blood cortisol? I have 2 pages of results, what should I look for? Thanx!

Most standard blood tests--like the Complete Blood Count or the Blood Chemistry don't include cortisol tests, and most doctors
seem to disregard cortisol level testing. Unless you specifically ask/insist/demand for your cortisol to be tested.

That Comprehensive Male Profile I from ZRT includes 4 salivary cortisol tests. (see my post above) Since all it requires is spitting into
plastic vials, four times during the day, you might consider that.

Girlwind, can an accupuncturist or other naturalist draw my blood for these tests?

Yes! I'm sure an acupuncturist would be willing to do that for you. That's actually a good idea.
« Last Edit: 01/11/2008 15:02:49 by girlwind »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1807 on: 01/11/2008 15:07:52 »
On a related note to Counterpoints' concern about adverse effects of drugs/remedies, I removed the Oxytocin cartoon I posted. Unlikely someone would take it because of a cartoon, but I'm not taking chances!

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1808 on: 01/11/2008 15:11:05 »
...Since all it requires is spitting into
plastic vials, four times during the day, you might consider that...

Oh my, Girlwind! I was taught that spitting/expectorating is impolite!!! [:o]

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1809 on: 01/11/2008 15:12:24 »
SOME INFO. ON ADRENAL DYSFUNCTION AND CORTISOL LEVELS

"The destructive effect of high cortisol levels

What is cortisol? In its normal function, cortisol helps us meet life's challenges by converting proteins into
energy, releasing glycogen and counteracting inflammation. For a short time, that’s okay. But at sustained
high levels, cortisol gradually tears your body down.

Sustained high cortisol levels destroy healthy muscle and bone, slow down healing and normal cell regeneration,
co-opt biochemicals needed to make other vital hormones, impair digestion, metabolism and mental function,
interfere with healthy endocrine function; and weaken your immune system.

Adrenal fatigue may be a factor in many related conditions, including fibromyalgia, hypothyroidism, chronic
fatigue syndrome, arthritis, premature menopause and others. It may also produce a host of other unpleasant
symptoms, from acne to hair loss.

The loss of DHEA production

When the adrenals are chronically overworked and straining to maintain high cortisol levels, they lose the capacity
to produce DHEA in sufficient amounts. DHEA (the full name is dehydroepiandrosterone) is a precursor hormone
to estrogen, progesterone, and testosterone, and is necessary to moderate the balance of hormones in your body.
Insufficient DHEA contributes to fatigue, bone loss, loss of muscle mass, depression, aching joints, decreased sex
drive, and impaired immune function.

Testing for adrenal fatigue

Conventional medicine is truly wonderful at treating disease-state conditions. Unfortunately its focus on drugs
also tends to suppress early-stage symptoms rather than treat their underlying causes. This can have the effect
of delaying treatment until a disease state has developed. This is true in the case of adrenal fatigue cortisol test-
ing. In the conventional standard of care, any cortisol level within a very broad range is considered normal, and
anything outside that range indicates disease.

In our practice, we measure cortisol levels at several points in the day to track the adrenals’ day–night pattern
(called the “diurnal rhythm”) using a panel of simple saliva tests. We hope to see cortisol elevated in the morning
to help you get going, lower but steady throughout the day to sustain energy, then fall in the evening to support
restful sleep.

In the early stages of adrenal dysfunction, cortisol levels are too high during the day and continue rising in the
evening. This is called “hyperadrenia.”
In the middle stages, cortisol may rise and fall unevenly as the body strug-
gles to balance itself despite the disruptions of caffeine, carbs and other factors, but levels are not normal and are
typically too high at night. In advanced stages, when the adrenals are exhausted from overwork, cortisol will never
reach normal levels (“hypoadrenia”).

Conventional medicine will detect only the extremes of these conditions, when damage to the adrenals has already
occurred
(Cushing’s disease and Addison’s disease). Within those extremes, you can feel miserable and still be told
your cortisol levels are normal. But by responding to early-stage symptoms of adrenal fatigue, we can reverse the
 developing dysfunction."




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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1810 on: 01/11/2008 15:15:26 »
...That's actually a good idea...

Whew! Thanks, girlwind, I was afraid I was striking out with you! [;D]

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Offline rock27

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1811 on: 01/11/2008 15:17:37 »
Demografix,

On my test report it said clearly 'cortisol 8 am' so I guess if you don't see 'cortisol' it was not included. I don't know another name for cortisol anyway. My 'in pois' cortisol 8 am was 306 nmol/L, so 9% above the lower borderline of the normal range (250-850 on my form). I will update when new info is available.
POIS, fatigue, brain fog, can't find words, irritated, can't concentrate.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1812 on: 01/11/2008 15:19:57 »
Girlwind, sincere thanks for the cortisol tutorial!

Do you have any similar info on prolactin? Including what relationship, if any, you think it has to POIS?

I'm speaking with my researcher friend mid-week and I'd like to be more prepared; he thinks there may be a relationship between POIS and IL-6, and a study I posted yesterday shows a link between prolactin and IL-6. Thanks!!
« Last Edit: 01/11/2008 15:22:05 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1813 on: 01/11/2008 15:20:54 »
Demografix,

On my test report it said clearly 'cortisol 8 am' so I guess if you don't see 'cortisol' it was not included. I don't know another name for cortisol anyway. My 'in pois' cortisol 8 am was 306 nmol/L, so 9% above the lower borderline of the normal range (250-850 on my form). I will update when new info is available.

Thanks, Rock27!

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Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1814 on: 01/11/2008 15:43:30 »
Were on a Cortisol kick.  Check this out!

Adrenal exhaustion is more difficult to resolve. Adrenal exhaustion involves a depletion of energy reserves and a loss of resilience. Symptomatic signs of adrenal exhaustion can be as diverse as fatigue, nervousness, anxiety, severe PMS, depression, brain fog, carbohydrate cravings, allergies, muscular pain and tenderness, joint pain, and irritable bowel syndrome. The goal of nutritional therapy in this situation is to restore the natural, diurnal release of normal levels of cortisol. The theory is if you provide the body with a small amount of a cortisol-like substance, the adrenal glands can take a rest and have an opportunity to regenerate. Then normal cortisol production will be restored.

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1815 on: 01/11/2008 15:57:07 »
Girlwind, sincere thanks for the cortisol tutorial!

Do you have any similar info on prolactin?

SOME INFO ON PROLACTIN

"This protein is produced by the pituitary gland and also by the uterine lining. Its best-known function is to promote
milk production in lactating (breastfeeding) women. Elevated prolactin levels (called hyperprolactinemia) may interfere
with ovulation and menstrual cycle regularity. They may also cause galactorrhea (inappropriate milk secretion) and de-
creased libido (sex drive)."

Effects

"Prolactin has many effects including regulating lactation, orgasms, and stimulating proliferation of oligodendrocyte
precursor cells. It stimulates the mammary glands to produce milk (lactation): Increased serum concentrations of prolactin
during pregnancy cause enlargement of the mammary glands of the breasts and increases the production of milk. However,
the high levels of progesterone during pregnancy act directly on the breasts to stop ejection of milk. It is only when the
levels of this hormone fall after childbirth that milk ejection is possible. Sometimes, newborn babies (males as well as females)
secrete a milky substance from their nipples. This substance is commonly known as Witch's milk. This is caused by the fetus
being affected by prolactin circulating in the mother just before birth, and usually stops soon after birth.

Prolactin provides the body with sexual gratification after sexual acts: The hormone counteracts the effect of dopamine,
which is responsible for sexual arousal. This is thought to cause the sexual refractory period. The amount of prolactin can
be an indicator for the amount of sexual satisfaction and relaxation.
Unusually high amounts are suspected to be responsible
for impotence and loss of libido (see hyperprolactinemia Symptoms). Prolactin also stimulates proliferation of oligodendrocyte
precursor cells. These cells differentiate into oligodendrocytes, the cells responsible for the formation of myelin coatings on
axons in the central nervous system. Prolactin also has a number of other effects including contributing to surfactant synthesis
of the fetal lungs at the end of the pregnancy and immune tolerance of the fetus by the maternal organism during pregnancy;
it also decreases normal levels of sex hormones — estrogen in women and testosterone in men." Prolactin delays hair regrowth
in mice."


"Most pituitary hormone production is controlled by signals that come in the form of other hormones. That means the
pituitary acts only when it receives a stimulating hormone message from elsewhere in the body. For example, when
thyroid activity is low, the hypothalamus, a higher brain center, releases the hormone TRH to stimulate the pituitary to
release thyroid-stimulating hormone TSH. (Surprisingly, the hormone TRH, in addition to stimulating the pituitary release
of TSH, also triggers the release of prolactin.)

Prolactin is a bit different from all other pituitary hormones. In most cases, production of pituitary hormones is normally
turned "off," and releasing hormones are sent to stimulate the pituitary when more pituitary hormones are needed. In the
case of prolactin, however, prolactin secretion is generally turned "on" unless the hypothalamus secretes the prolactin-
inhibiting hormone dopamine to turn prolactin production "off."
Dopamine travels from the hypothalamus to the pituitary
in a small network of veins called a venous portal system. Anything that interferes with this fine network may prevent this
inhibitory message from reaching the pituitary gland. The result is that the pituitary will produce too much prolactin. In
some cases this overstimulation induces the overgrowth of prolactin-producing cells, and a small pituitary tumor (adenoma)
is the result.

When the hypothalamus sees that prolactin levels are too high, it manufactures more dopamine, trying to get prolactin levels
back to normal. Unfortunately, if the message doesn't get through, the pituitary continues to produce and release prolactin.
Meanwhile, the high levels of dopamine in the hypothalamus can block the release of another hormone, GnRH, which is
necessary for normal ovarian function".

[/i]



SOURCES:  wikipedia.org,  yourtotalhealth.ivillage.com
« Last Edit: 01/11/2008 15:58:46 by girlwind »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1816 on: 01/11/2008 16:05:47 »
SOME INFO ON PROLACTIN...


Thanks again, girlwind!

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1817 on: 01/11/2008 17:11:14 »
Were on a Cortisol kick.  Check this out!

Adrenal exhaustion is more difficult to resolve. Adrenal exhaustion involves a depletion of energy reserves and a loss of resilience. Symptomatic signs of adrenal exhaustion can be as diverse as fatigue, nervousness, anxiety, severe PMS, depression, brain fog, carbohydrate cravings, allergies, muscular pain and tenderness, joint pain, and irritable bowel syndrome. The goal of nutritional therapy in this situation is to restore the natural, diurnal release of normal levels of cortisol. The theory is if you provide the body with a small amount of a cortisol-like substance, the adrenal glands can take a rest and have an opportunity to regenerate. Then normal cortisol production will be restored.

Sure sounds like POIS!

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Offline hurray

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1818 on: 01/11/2008 17:50:38 »
With regards to prolactin, I spent several weeks trying cabergoline as a cure to POIS last year. Cabergoline is supposed to suppress prolactin prodution in the pituitary gland, however it had little real effect on my POIS symptoms.

So either the drug was not doing what it was supposed to, or in the case of my POIS symptoms, reducing prolactin levels didn't have much effect.

Of course other people's POIS symptoms may be due to different causes to my own, and prolactin may well play a key role for many people here - just wanted to add that there did not appear to be a strong link with prolactin in my own case.

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1819 on: 01/11/2008 18:58:59 »
Were on a Cortisol kick.  Check this out!

Adrenal exhaustion is more difficult to resolve. Adrenal exhaustion involves a depletion of energy reserves and a loss of resilience. Symptomatic signs of adrenal exhaustion can be as diverse as fatigue, nervousness, anxiety, severe PMS, depression, brain fog, carbohydrate cravings, allergies, muscular pain and tenderness, joint pain, and irritable bowel syndrome. The goal of nutritional therapy in this situation is to restore the natural, diurnal release of normal levels of cortisol. The theory is if you provide the body with a small amount of a cortisol-like substance, the adrenal glands can take a rest and have an opportunity to regenerate. Then normal cortisol production will be restored.

Sure sounds like POIS!

Many of these same symptoms are indicative of LOW THYROID as well. That's probably because the adrenals and thyroid
work together as part of the same endocrine system, and when one is burnt out--usually the adrenals, then the thyroid has to
pick up the extra slack.

I spoke with a naturopath about this adrenal/thyroid connection, and she told me that anything that helps the adrenals regain
a healthy state, will indirectly help the thyroid. As long as the thyroid is not already "damaged" and very hypothyroid--which
necessitates direct thyroid treatment.
« Last Edit: 01/11/2008 19:48:20 by girlwind »

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1820 on: 02/11/2008 00:10:32 »
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.
« Last Edit: 02/11/2008 13:24:46 by martin88 »

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1821 on: 02/11/2008 00:17:47 »
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 ?

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1822 on: 02/11/2008 00:38:08 »
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.
« Last Edit: 02/11/2008 18:06:57 by demografx »

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1823 on: 02/11/2008 04:20:21 »
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.
« Last Edit: 03/11/2008 12:59:13 by martin88 »

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1824 on: 02/11/2008 13:45:54 »
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

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1825 on: 02/11/2008 15:29:41 »
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.



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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1826 on: 02/11/2008 17:26:07 »
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/

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1827 on: 02/11/2008 18:13:08 »
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)!
« Last Edit: 02/11/2008 18:15:45 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1828 on: 02/11/2008 18:22:41 »
...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).
« Last Edit: 02/11/2008 18:28:33 by demografx »

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1829 on: 02/11/2008 19:45:20 »
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

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1830 on: 02/11/2008 21:16:49 »
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.

« Last Edit: 02/11/2008 21:39:31 by Counterpoints »

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1831 on: 02/11/2008 21:49:57 »
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.

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1832 on: 02/11/2008 21:53:04 »
Girlwind, the research neurologist I talked with disagrees with you in regards to thyroid (he seemed to only care about TSH).

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1833 on: 02/11/2008 21:55:13 »
...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!
« Last Edit: 02/11/2008 22:11:50 by demografx »

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1834 on: 02/11/2008 22:00:38 »
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.
« Last Edit: 02/11/2008 22:03:36 by girlwind »

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1835 on: 02/11/2008 22:13:30 »
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.


« Last Edit: 02/11/2008 22:19:43 by Counterpoints »

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1836 on: 02/11/2008 22:16:22 »
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.

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1837 on: 02/11/2008 22:16:31 »
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.

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1838 on: 02/11/2008 22:37:03 »

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.

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1839 on: 02/11/2008 22:48:15 »
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."


« Last Edit: 02/11/2008 23:02:44 by girlwind »

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1840 on: 03/11/2008 01:52:48 »
Thanks a lot Girlwind for your suggestion on tryptophan I'll investigate. I like to be sure when I do something. For melissa I was taking one teaspoon full of herb (dry but very green, in a strainer) in hot water.

For me there is no naturopaths or MD but only good and bad. You can find the two in both. Sure for a serious disease I'll see a MD because he is trained for urgency and severe diseases. Naturopaths are not. But believe me MD can be really "not intellectual" and devastating, even with their long and hard studies. Be careful. MD know a lot but they don't know all. I'm sure we are still in an old age. I have been severely and irreversibly affected by a medication I wasn't supposed to receive in my condition. It was clearly a contraindication for me.
 
An other example, at one time in my life I wasn't able to fall asleep at bedtime. I went to see several MD and I tried all their medications  Nothing was working! It was really difficult for me. One day I decided to stop coffee in the morning and miracle (!) since this I'm able to fall asleep 99.9% of the time since almost 20 years ! A chance I wasn't put on heavier medications like other people I know, now they can't stop and they'll have side effects for the rest of their life.
For several other serious problems I've had it was like that. I was able to cure myself with alternative therapies.
The downside of this is that I always think I will be able to be cured by alternative therapies and I'm waiting a long time to try conventional drugs.

About cortisol tests it's easy to compare both for accuracy. Probably it depends from which lab you order the test.

There is always some good and bad in all, this is my religion.
« Last Edit: 03/11/2008 04:15:06 by martin88 »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1841 on: 03/11/2008 03:41:48 »
...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...

Girlwind, what I'd like to ask you is not being negative or critical. I'd really like to know your thinking. Why do you think your POIS and thyroid are related? Is it basically that the better the thyroid readings the less severe is the POIS?

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1842 on: 03/11/2008 04:12:40 »
Martin, thank you very much for sharing your painful experience and shedding more light on the MD vs. naturopath debate. Excellent point re good and bad in both areas. As you pointed out, reasonable caution needs to be used when NOT seeking medical advice for serious ailments for which naturopathy has no remedy. Conversely, naturopathy just may have something for a particular problem that can help avoid a lifetime of adverse side effects. As I like to say often, "don't throw out the baby with the bathwater!"

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1843 on: 03/11/2008 04:16:29 »
Naturopathy vs. MD testing

My conclusion is that we are all grownups and should choose our own individual path of enlightenment.

Please read the previous recent posts which address this debate before deciding. Thank you.

Happy testing!
« Last Edit: 03/11/2008 04:21:27 by demografx »

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1844 on: 03/11/2008 15:30:15 »
...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...

Girlwind, what I'd like to ask you is not being negative or critical. I'd really like to know your thinking. Why do you think your POIS and thyroid are related? Is it basically that the better the thyroid readings the less severe is the POIS?

I don't have that figured out. All I know is that since I began taking some supplements to assist the thyroid, like
seaweed and sea salt and Ashwaganda, I noticed less severe POIS. What has interfered with my observations is a
five week long sinus cold that I can't shake. I'm dealing with multi health issues, so it's really hard to separate one
from the other and assess just the POIS. But in GENERAL during my 30 years with both CFS and POIS I've seen that
when my overall health and energy are better, my POIS is better. And I think my overall health benefits a lot from
getting my endocrine system boosted. At first it was just the adrenal energy I was aiming to repair, and I was seeing
results with just that, but not complete results. Now that I've seen I have a thyroid issue, as the long time missing
link, I have begun to notice benefits from just a few changes to assist better thyroid functioning. It is a NEW find,
but a significant one for me. Time will tell how it pans out.

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1845 on: 03/11/2008 15:36:09 »
Naturopathy vs. MD testing
My conclusion is that we are all grownups and should choose our own individual path of enlightenment.
Please read the previous recent posts which address this debate before deciding. Thank you.
Happy testing!

Thanks for the posting. We definitely have the freedom to choose who we see or don't see for our own
individual personal health care and diagnostic testing.
« Last Edit: 03/11/2008 17:03:01 by girlwind »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1846 on: 03/11/2008 19:31:07 »
Thanks for the posting. We definitely have the freedom to choose who we see or don't see for our own
individual personal health care and diagnostic testing.

I think our POIS research is already benefitting from eclectic exploration: Levitra components work, but so do fenugreek and relora, and perhaps garlic.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1847 on: 03/11/2008 21:59:55 »
With regards to prolactin, I spent several weeks trying cabergoline as a cure to POIS last year. Cabergoline is supposed to suppress prolactin prodution in the pituitary gland, however it had little real effect on my POIS symptoms.

So either the drug was not doing what it was supposed to, or in the case of my POIS symptoms, reducing prolactin levels didn't have much effect.

Of course other people's POIS symptoms may be due to different causes to my own, and prolactin may well play a key role for many people here - just wanted to add that there did not appear to be a strong link with prolactin in my own case.

Hurray, very interesting. Prolactin is an interesting POIS suspect. Thanks for posting.

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Offline acronym

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1848 on: 04/11/2008 11:51:49 »
Alternative Medicine vs. MD testing
I think it is in the best interests of everyone on this forum that people go down both paths. They both have their pros & cons. When it comes to CFS/POIS I am using both. I would have to say though that I have made the biggest strides using Alternative Medicine therapies. Like Girlwind and many other CFS suffers you lose faith in conventional doctors after a while. I am currently seeing a great doc who is a laterall thinker and researches, but they are the exception. I agree with the comment most probably don't do much in the way of furthering their knowledge past graduation. If it was not in their textbook then it doesn't exist or it must be depression. For most GPs or MDs (depending on where you live), that is the basket for POIS.
On a private note - it annoys me when I hear recent high school grads with great grades getting asked what they want to study at uni, and they answer..either study law or medicine. Like, I can see the connection...writing a drug scrip is just like writing a clause in a contract isn't it!

My opinion on thyroid tests - listen to Girlwind, I have heard of too many cases where people continue to suffer for years after only having just basic TSH test or having to fight doc to try different drug treatment.

Likewise if you are getting your testosterone tested make sure they test free test also. All I had tested was just total T for a number of years and it came back on low side but just in normal range. I was told well its normal, and you are too young to go mucking around with with taking extra testosterone. (huh!) After number of yrs I finally had my free T tested and it came back abnormal. Hello! Testosterone can be bound to SHBG and rendered inactive, like a number of other hormones can be bound to enzymes or globulins.

Also - I have made a post regarding POIS on a pituitary forum asking if its members can relate to POIS. I heard of someone who had hypopituitism who also had POIS. I have been diagnosed with hypopituitism. On this pituitary forum there are also numerous stories of people getting dicked around by incompetent/negligent/lazy medical specialists.
I will monitor my post there and report back what I get.
Cheers

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1849 on: 04/11/2008 18:46:09 »
Alternative Medicine vs. MD testing
I think it is in the best interests of everyone on this forum that people go down both paths. They both have their pros & cons...

...On this pituitary forum there are also numerous stories of people getting dicked around by incompetent/negligent/lazy medical specialists.
I will monitor my post there and report back what I get.
Cheers

Acronym, excellent post. Thank you!

And looking forward to hearing more about the pituitary forum!
« Last Edit: 04/11/2008 20:02:48 by demografx »