[hardasnails1973]

When looking at person one would have to assess the person from mental, emotional and phyiscal stand point. In most POIS people there have been subclinical hormonal imbalances which have been discovered numerous time.  Most Dr's  treat based upon numbers rather then symptoms that the problem with medicine today.  POIS cases that I have seen stem from emotional trama as well as also severe hormonal and neurological imbalance. First of all I could care about the TSH I look for the other levels and what things are binding it.  One needs to go after the cause vs the symptoms of things.  That is why as I posted one needs to look at all aspects of the person.  When one starts digging it will be surprise of what information is found.  I have dealt with sexual exhaustion from over masturbation, POIS, DNA mutations. Basically you name it I have come across it.  Its ashame that people abroad do not have the drs over there that understand hormone and neurological interactions with the immune system. 

Martin,
If one thinks tsh of 4.4 is hyperthyroid then people really need to be educated properly.  The lower the TSH the faster the thyroid. When there is a neurological compenent involved TSH is a worthless reading.  When ferritin levels goes below 130-150 then one cellular energy is decreased.  How I came up with this number I took people that were hormonally balanced vs people that where ill then compared them.  People that were ill had ferritin <100
People that where health averaged 135-200. That was just a general observsation.  With any disorder nutrition, lifestyle, and proper sleep hygiene, stress management, hormonal balance is essential for recovery. 

TSH can be tricky
CAse example
Male 25
TSH 5.5
ft3 3.9 (2.5-4.2)
ft4 1.7 (.8-1.
Total t-3 110 (97-210)
total t-4 7 (4-12)
Cortisol am 10.5 (4-20)
OMG hes hyperthyroid !!  WRONG!!

Dr's have not clue what to do

Problem solved
Adrenal cortisol profile showed low cortisol levels
adminster cortef at 20 mgs a day

Retest in 6 weeks
tsh 2.1
total t-3 same
total t-4 same
ft4 .1 (.8-1.
ft3 2.4 (2.3- 4.2)

WOW his thyroid levels dropped to reveal potential hypothyroidism
Now adminstering armour thyroid at 1/2 grain increments every 3 weeks retesting in 6 weeks. TSH is now suppressed (worthless testing from now on)  total t-3 and t-4 going , ft3 , ft4 increasing. Hypothyroid symptoms are resolving (fatigue, hairloss, fatuge, PE, muscle loose) 2 month later person is 80% better, but dr's did not know what to do.

[demografx]

In most POIS people there have been subclinical hormonal imbalances which have been discovered numerous time...POIS cases that I have seen stem from emotional trama as well as also severe hormonal and neurological imbalance...I have dealt with sexual exhaustion from...POIS...

You have been asked twice, this is now 3X, to explain your specific POIS patient experience and studies.

If you refuse to reply, I can only assume that this is spam and will therefore ban you from the forum.

[hardasnails1973]

How about some food for thought?  
Has any one considered the fact that people with POIS actually have a defect in the amount of oxytocin that is produced after organism. Researchers can look and conducts study to they are blue in the face.  When the most complex problems have the simpliest answer.  I find this popular in many diseases as I am currently researching  with a huge university on studies which may lead to cure of cystic fibrosis through understanding the mechanism by which it activates through a genetic mutation in a specific gene that is altered from birth.  Has any one measured brain function through Brain Mapping before and after an orgasm with a person with POIS vs a normal person to see the difference?  Some thing biological or neurologically must happen different in normal people.  Or is it the fact that people with POIS burn more cortisol during orgasm since it is a eustress resulting in depletion of your reserves. THAT IS THE MOST LOGICAL ANSWER.

[martin88]

Martin,
If one thinks elevated TSH is hyperthyroid then people really need to be educated properly. 

I agree it's perhaps rare but it is possible :
Here is a study from Oxford describing people with hyperthyroidism and high TSH.

Hypersecretion of TSH by a pituitary adenoma is thought to be a rare form of hyperthyroidism....Plasma thyroxine, free T4 and tri-iodothyronine were repeatedly raised in each; plasma TSH was grossly elevated in one
http://qjmed.oxfordjournals.org/cgi/content/abstract/75/1/345 [Links inactive - To make links active and clickable, login or click here to register]

And adenoma has been found on several case of POIS..

Thank you for your suggestion about ferritin. I'll look at this.

[martin88]

May I know what will be the follow-up about NORD ? We can contact them again to explain why we can’t do what they ask (if we can’t) , they’ll eventually come back with  other suggestions.
I think we're not so far of a research on POIS. If 100 pois sufferers give 350$ to the persons in charge of the research then it's the required 35000$ !

[demografx]

We don't have 100.

[demografx]

Has any one considered the fact that people with POIS actually have a defect in the amount of oxytocin that is produced after organism.

If you bothered to check, instead of stating the question arrogantly, there are many, many references to oxytocin discussed at this forum:
http://www.google.com/search?hl=en&q=oxytocin+POIS+site%3Ahttp%3A%2F%2Fthenakedscientists.com&aq=f&oq=&aqi=

[demografx]

May I know what will be the follow-up about NORD ? We can contact them again to explain why we can’t do what they ask (if we can’t) , they’ll eventually come back with  other suggestions.

I think we're not so far of a research on POIS. If 100 pois sufferers give 350$ to the persons in charge of the research then it's the required 35000$ !

Martin, when I posted here about NORD, asking for feedback, no one responded. I assumed there was little enthusiasm. I could be wrong though.

[hardasnails1973]

In the people that have POIS that I have encountered (males) have abnormal  (low cortisol, functioning thyroid,low thyroid, abnormal neurotransmitters). When these were adjusted it helped symptoms of POIS. As I peruse these boards a lot of members have also encountered the same hormonal imbalances it appears.

[demografx]

...it takes priority over all things as Dr Mariano nicely pointed out...

The owner and moderator of this discussion board is Dr. Romeo B. Mariano who has his medical practice in Monterey CA. He's a psychiatrist with a specialty in behavioral endocrinology.

Some bodybuilders swear by him. To a number of people, he seems very controversial. I'll just give you a couple examples, by no means comprehensive in any way in describing his practice.

From internet postings and at least with one individual at this forum, he has reportedly swayed people with low testosterone away from TRT (testosterone replacement therapy) - the standard, extensively tested medical treatment worldwide for low testosterone - and instead recommended a multitude of supplements.

I am on TRT and it has changed my life. POIS episodes are now 75% to 90% healed, after searching for every possible cure under the sun, to no avail, for over 30 years. (This POIS treatment works for me, and is not recommended as a "cure" for POIS. Everyone is different and should be tested and treated in accordance with their own unique symptoms.)

He reportedly believes in neurotransmitter testing. My university endocrinologist, a respected academic and endocrinology-based practitioner for 30 years, says that neurotransmitter testing is a great idea, but it's highly unreliable.

Again, some bodybuilders think he has "the answers" to endocrine-related problems. After the first visit, everything is conducted by telephone, according to posted reports.

I would encourage extremely careful investigation into specific treatments recommended.

[hurray]

Hi Demo, haven't posted here for a bit but have been keeping track of your success story - long may it continue

Have been reading hardasnails1974's posts with interest - I somehow doubt that he/she has read through all 200odd pages as many here have (myself included), so I was interested to see them coming up with ideas related to oxytocin and cortisol without any outside help - I would be interested to hear hardasnail's thoughts as to how we could go about investigating those "food for thought" issues further.

Perhaps we can put his long, technically-charged posts down to enthusiasm having found this site?

The one thing that baffles me hardasnails is that you are talking about POIS as if it were a recognised ailment that you have had experience of treating. Is this really the case - the collective experience of this forum indicates that only a tiny percentage of qualified medical professionals have any idea that POIS exists. How long have you been dealing with it?

[demografx]

In the people that have POIS that I have encountered...

Is that 0, 1 or 2?

That's why I assume you won't reply to a number of questions asked of you from us. It only helps your credibility with those who are fond of longwinded, rambling, streaming monologue, presumably displaying vast knowledge.

An insult to our intelligence, for the most part.

[demografx]

[hardasnails], [h]ow long have you been dealing with [POIS]?

Hurray, haha, great question. Wanna wager that he won't reply? []

[martin88]

May I know what will be the follow-up about NORD ? We can contact them again to explain why we can’t do what they ask (if we can’t) , they’ll eventually come back with  other suggestions.

I think we're not so far of a research on POIS. If 100 pois sufferers give 350$ to the persons in charge of the research then it's the required 35000$ !

Martin, when I posted here about NORD, asking for feedback, no one responded. I assumed there was little enthusiasm. I could be wrong though.

Personally I was interested but didn't know what to say.
Also I was thinking 35000$ from exterior donations, it's unreachable. But from POIS sufferers I now think it's eventually possible (in the future).

[hurray]

To be honest I wasn't intending either humor or criticism, although both may end up being justified!  []

I would like to hear more about his ideas regarding oxytocin and cortisol, and what could be done to limit their depletion.
Hopefully he will provide some valuable contributions and engage with us ... let's see!

[demografx]

May I know what will be the follow-up about NORD ? We can contact them again to explain why we can’t do what they ask (if we can’t) , they’ll eventually come back with  other suggestions.

I think we're not so far of a research on POIS. If 100 pois sufferers give 350$ to the persons in charge of the research then it's the required 35000$ !

Martin, when I posted here about NORD, asking for feedback, no one responded. I assumed there was little enthusiasm. I could be wrong though.

Personally I was interested but didn't know what to say.
Also I was thinking 35000$ from exterior donations, it's unreachable. But from POIS sufferers I now think it's eventually possible (in the future).

Ah, now I understand better. But instead of many sufferers, Martin, just one wealthy benefactor who happens to be a POIS sufferer could kick-start this whole POIS-research process nicely. []

I think we should explore all avenues.

Similar to this, I've thought for some time that a physician (maybe best an endocrinologist?) who is POIS-afflicted would be a very powerful ally!

We'll get there!

[hurray]

I don't think $35000 is an impossible target at all. I would happily throw $1000 in the hat if I thought it could lead to a solution to POIS.

I would want to know more about exactly what my money was doing first, though, and whether further donations would be needed down the line in order to sustain the effort.

[demografx]

Hopefully he will provide some valuable contributions and engage with us ... let's see!

Wish I could be as optimistic, but he's totally ignored pointed questions about his POIS-credibility.

And totally ignored factual questions about errors pointed out by us.

Definitely not a straight-shooter.

Big red flags as far as I'm concerned.

If legitimacy doesn't come around soon, he's banned. If that means throwing out the good with the bad, how are we to know which is which?

[demografx]

I don't think $35000 is an impossible target at all. I would happily throw $1000 in the hat if I thought it could lead to a solution to POIS.

I would want to know more about exactly what my money was doing first, though, and whether further donations would be needed down the line in order to sustain the effort.

Hurray, thank you for your vote of confidence!

You're absolutely right, I've thought the same exact thing. We could spend the money wrongly and wind up with an introductory fluff chapter in a new book on POIS!

If we raised the money ourselves, we of course could scrutinize an organization like NORD very carefully to see what they would add to the mix. If some of us, for example, could contribute our time, we could pull off the effort ourselves by hiring the medical researchers.

I wonder if Bill Gates or Warren Buffet have POIS? Hmmmmm......

[demografx]

Another thought: $35,000 is what NORD wants. If we started more independently, who's to say $5,000 couldn't get us rolling? We should all think about the first steps and perhaps take it a step at a time, as they say, while we're looking for Bill Gates to write us a big check.

[hurray]

Another thought: $35,000 is what NORD wants. If we started more independently, who's to say $5,000 couldn't get us rolling? We should all think about the first steps and perhaps take it a step at a time, as they say, while we're looking for Bill Gates to write us a big check.

Absolutely - if we have some funds to offer, it's possible that the likes of Dr. Waldinger and Dr. Schweitzer may look into conducting more research into POIS. I'm not sure how you would go about fundraising on a forum, perhaps a combination of public and private pledges for funds towards a specific goal? Must catch up on my beauty sleep now  []

[martin88]

repetitive lab tests, scans, etc is probably more than 2000$/person (but this can perhaps be paid by our own insurances). So 5000$ seems to me to be low to conduct a serious study.
I think the money could be sent directly to NORD (?) or to the organization where the researchers are. But definitely they should find something for sure if we send money. At least they should be able to rule out some of the possible causes we have explored.

[demografx]

Good point, Martin. I just threw out the "$5,000" figure as a starting point, not for any significant research. But I think that the NORD email we initiated, and got a reply from, was good in that it now has us talking about the next step for more serious POIS research.

We also know that $35,000 is realistic for some research. Before that, I had no idea what a minimum might be.

[demografx]

I had nothing to say except that this is my 2,000th post on POIS!     []



                         

[demografx]

            To all: our naturopathic friend's been banned.

[demografx]

I think we're not so far of a research on POIS. If 100 pois sufferers give 350$ to the persons in charge of the research then it's the required 35000$ !

If we have some funds to offer, it's possible that the likes of Dr. Waldinger and Dr. Schweitzer may look into conducting more research into POIS. I'm not sure how you would go about fundraising on a forum, perhaps a combination of public and private pledges for funds towards a specific goal?

 

Martin, and hurray, I re-thought what was said and realized that we have had approx 150 individuals posting here at the POIS thread. Presumably, even though they're inactive, a Private Message to their username here will be forwarded to their regular email address!

And, possibly B_Jim has another 100 that could be tracked down from his out-of-forum research?

Perhaps we could conduct a small fundraising drive? Also, we might find additional willing participants for a POIS research study.

[demografx]

Maybe we should follow NORD's advice and create a more formal POIS Group?

For example, yesterday I noticed that the prestigious W. M. Keck Foundation accepts grant proposals from groups, but not individuals.

[demografx]

repetitive lab tests, scans, etc is probably more than 2000$/person (but this can perhaps be paid by our own insurances). So 5000$ seems to me to be low to conduct a serious study.
I think the money could be sent directly to NORD (?) or to the organization where the researchers are. But definitely they should find something for sure if we send money. At least they should be able to rule out some of the possible causes we have explored.

Martin, sad to say, there are no guarantees as to what the researchers will find - for ANY amount of money!

That's why it's absolutely critical for us to VERY critically review the researchers' credentials, and monitor progress, and generally be as fully involved as possible in the research study process.

[Dean93]

Hey everyone,

Now that the issue of funds is being discussed, I think this would be an appropriate time to seriously consider a POIS website, as it could be used to collect donations an further spread the word about POIS. While this is a great place for us, the sufferers, to converse, I think it's a  pretty generally accepted opinion that it, being so huge, is highly unapproachable to anyone outside of the group.

[hurray]

Congratulations on 2000 posts Demo - hope there will be many more milestones to come  []

Unless we eradicate POIS that is, then we wouldn't have anything to post about  []

[hurray]

I can't see how a fundraising drive would hurt - I would be happy to pledge some money - so long as it clear to everybody what we are raising funds for. If we are planning on PMing everyone who has posted here, we need to have a clear goal to aim towards. The $35000 to get NORD involved sounds like an excellent idea, I wonder if NORD could tell us how far that money would go?

Creating a formal POIS group sounds like a great idea - I consider everybody on this forum as part of the group, although I'm not sure how that could be formally recognised!

An official POIS website is a great idea - I hope somebody with the relevant skills and knowledge will build one some day! Whether we would need that to collect money or not I don't know - for example I mentioned to Demo that I would be happy to pledge $1000 towards POIS research if we fully identify a worthwhile way to spend the money.

Informal pledges via this forum may be the best way to get things moving initially - the money doesn't need to be collected until we have reached our target.

[Limejuice]

Raising money out of pocket for NORD seems worth while but some of us have insurance we can use. We pay for insurance so we can use it when were sick and help mitigate high cost of medical assistance. That sounds a lot like what we need for POIS.

[mat780]

Dear All,

I’ve been following the posts from time to time since the beginning of this year, when my andrologist told me that I had POIS (that same day I found this forum).
I remember saying, when he told me what I had: “Well… it doesn’t have a cure, but at least it has a name”.

In the same situation as I am (passive readers), I suppose there are probably many more.

I think that a POIS website would be a great idea to diffuse what POIS is. I believe there are thousands (highly probable a lot more) of people suffering the same as us, but they haven’t found this forum (as it’s a little hidden), and the only way to find it is when you already know that it’s called POIS.

Limejuice: Please, don’t get me wrong… but I doubt too much that your medical insurance company will pay for a POIS investigation in a million years  []

Thanks to all of you that contribute to this great forum!!!
Demo keep on with this hard work!!!

PD: I apologize for my writing; I’m not a native speaker of English  []

[hurray]

Raising money out of pocket for NORD seems worth while but some of us have insurance we can use. We pay for insurance so we can use it when were sick and help mitigate high cost of medical assistance. That sounds a lot like what we need for POIS.

If your medical insurance will pay to investigate POIS this would be an enormous help to everybody on this forum! I admit that I had doubts that medical insurance would cover an illness that so little is known about by the medical community, but I hope you can persuade your insurers to help Limejuice! Good luck and let us know what happens!

[hurray]

Welcome mat, hope to hear more from you  []

[demografx]

Limejuice, I agree. And I think that's because it's a bureaucratic route to take.

Which is only one option. We have a tremendous amount of resources and knowledge about POIS from the 2+ years at this forum, and we have a bright and motivated group of people here (with the exception of your moderator).

So one option is to simply raise funds, then spend them very, very carefully. At the same time, there's no reason we can't continue to send out appeal emails, like we did with WHO and NORD.

And what you point out about insurance is true. I've been working with a major university hospital's endocrinology program, and even though it's outside my medical-network, the insurance still covers quite a bit!

The brain scan, for example, cost about $3,000. I paid a tiny fraction of that.

[demografx]

mat780, welcome to the POIS thread of The Naked Science Forum!




Here are some POIS forum resources which may be helpful to you:

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

"Girlwind" has created an excellent POIS Video:

[demografx]

mat780, this post below might help you find answers easier by tailoring a Google search to this POIS forum:

SEARCH POIS FORUM WITH GOOGLE

We have an overwhelming amount of data: over 2 years' worth of posts from 150+ Forum members.

In the Google search box, type
whatever you're interested in finding[space]site:http://www.thenakedscientists.com/

for example, I tried
demografx site:http://www.thenakedscientists.com/

and 1,000+ results came up for "demografx" within POIS Forum.

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.

[Limejuice]

Thanks Demo.

I've had over 10 doctor visits, over 10 blood draws, and over 30 hormone tests all for POIS.  And I've paid maybe $100 because of insurance.  As long as the doctor orders the tests with a diagnosis - it doesn't need to be called POIS, it can be called severe brain fog, or intense apathy or whatever because your sick and that what matters for insurance - insurance will likely cover the expense.  That's what it is there for and why we can use it.

[martin88]

At the same time, there's no reason we can't continue to send out appeal emails, like we did with WHO and NORD.

I agree, and that's why since last week I'm working on a form to collect emails. It was initially Counterpoints who talked in the forum about collecting emails, so thanks to him for this.

For the research I'd say that if the resarchers could contact our own MDs then insurance will have to pay, but perhaps it doesn't work like that. Maybe NORD can give more information about this because they know people who went through the same way.

[mat780]

People,

When I said that it is very unlikely that medical insurance will investigate POIS, I didn’t mean that doctors won’t make you all the tests needed, even if each test cost a fortune! I live in Argentina (hope I’m not infringing any forum rule saying that  []), and if you have a good medical insurance they won’t stop you or ask you for another cent to make you those tests prescribed by your doctor. What I meant is that researchers, at least here, don’t have much relation with medical insurance companies. Medical insurance companies pay for doctors and tests, but I understand they won’t pay anyone to investigate a new strange illness.
I believe we should focus on people that do serious research as a living (universities and foundations), and try to diffuse information about POIS as much as we can.

In the case we finally decide to create a POIS website, you can count on me to make the Spanish translation of it.

Thanks to all of you for the welcome!  []

[EDS]

I had nothing to say except that this is my 2,000th post on POIS!     []





                         

Congratulations on the 2000th posts Demo! You do a great job as moderator!!

Count me in for a contribution toward research. I would gladly pay $1000 for serious scientific analysis on this malady.

[martin88]

In the case we finally decide to create a POIS website, you can count on me to make the Spanish translation of it.

Very nice proposition Mat! Thank you. This could be also useful for the Wikipedia articles.

John,B_Jim,Going crazy,
You all convinced me to start blueberries,cranberries,probiotic diet!
Maybe this can help: if the antioxydant is the active ingredient it seems that wild blueberries are better according to this table :
http://en.wikipedia.org/wiki/Oxygen_radical_absorbance_capacity#Food_Sources [Links inactive - To make links active and clickable, login or click here to register]

There is a study linking social phobia with antioxydant (in humans!) (I'm not sure however if they say that SP will be helped with increased intake of antioxydants.):
http://www.ncbi.nlm.nih.gov/pubmed/18339429 [Links inactive - To make links active and clickable, login or click here to register]

[mat780]

Martin,
You can count on me for the Wikipedia article too!
Please, bear in mind that I’ve never written anything on the Wikipedia, and I don’t know much about scientific or medical vocabulary. Anyway, if you want me to do it, I’ll give it a try  []

[Limejuice]

Gotcha Mat.

Strange, I did a google search on Lactobacillus casei and the first result mentioned candida in the description.  I wasn't even searching for candida.  I thought Lactobacillus casei did something completely different than effect candida.  Just thought I'd mention it.

[GoingCrazy]

Gotcha Mat.

Strange, I did a google search on Lactobacillus casei and the first result mentioned candida in the description.  I wasn't even searching for candida.  I thought Lactobacillus casei did something completely different than effect candida.  Just thought I'd mention it.

Thats why Im taking Threelac

[demografx]

Thanks Demo.

I've had over 10 doctor visits, over 10 blood draws, and over 30 hormone tests all for POIS.  And I've paid maybe $100 because of insurance.  As long as the doctor orders the tests with a diagnosis - it doesn't need to be called POIS, it can be called severe brain fog, or intense apathy or whatever because your sick and that what matters for insurance - insurance will likely cover the expense.  That's what it is there for and why we can use it.

Exactly! I'm being treated for hypogonadism, which is true!

Who knows where hypogonadism and POIS intercept?

Another important point, I think, is that a diagnosis of "POIS" for labwork would halt progress immediately I'm sure!

[demografx]

Congratulations on the 2000th posts Demo! You do a great job as moderator!!

Count me in for a contribution toward research. I would gladly pay $1000 for serious scientific analysis on this malady.

EDS, thank you so much for both items!

We're rich!! I'm sure if we approached Dr. Waldinger with this as a beginning, he would at least respond to my emails!!  []

EDS, it's great to have your feedback about moderating. Most people do understand my actions and thinking, or at least I would like to think so.  []

And you, EDS, as one active forum participant (for which I thank you very much), do seem to understand that everything I say or do is only for the benefit of wiping that filthy scourge called POIS right off the planet Earth! (and if POIS is on other galaxies, that, too [])

And I am certainly not into "personality", "ego", "agenda", as a very very few have insinuated.

This is a teriffic group!!!

[demografx]

There is a study linking social phobia with antioxydants (in humans!) http://www.ncbi.nlm.nih.gov/pubmed/18339429 [Links inactive - To make links active and clickable, login or click here to register]

Martin, but what if I come back reincarnated as a rat and want to socialize?  []

[demografx]

In the case we finally decide to create a POIS website, you can count on me to make the Spanish translation of it.

Thanks to all of you for the welcome!  []

Thanks for your thanks to the group!

We have discussed a website many times. Great idea! But it seems we don't have the volunteers needed to create it and run it. This Naked Science forum has a dedicated infrastructure that we could not possibly duplicate with the resources we have.

It has been a big struggle, at least for me, to continually keep this forum alive, considering how few POIS sufferers there are in the world. And once people visit, only a very few dedicated ones stay and contribute. And we also have 350,000 page views, representing a large "lurking" visitor population. I hope they all benefit, but not many step forward to take the next step. We also have other priorities: outreach, funding, awareness, wikipedia, not to mention our own POIS treatments, as well as the exploration of POIS theories, remedies, and mutual support!

We are completely open to it, though. It would advance our cause quite a bit!

Someone, anyone, please correct me if I'm wrong about volunteers and resources necessary to develop and maintain our own website!