[lauracostis]

An open post to hurray, EDS, and Defsync

The three of you magnanimously pledged some financial support to studying POIS. Many thanks again, that was an incredibly wonderful gesture on your part!

By pledging, you have done enormous good to the cause of curing POIS, giving us all renewed hope and confidence that we're on the right track.

Just wondering lately, since the outside world of research is slow in rushing to our aid (we've been at this forum for 3 years now), how would you three feel about starting "somewhere". Anywhere. But Now! Using our own considerable resources?

A few of us here think that a state-of-the-art SCAN of the brain, such as an fMRI, before, during and after orgasm, could reveal plenty.

This advanced scanning (not generally available publicly) could give us deeper insight into the hormonal/neurotransmitter/brain-function data that we seem to be "just around the corner" from finding. I would be glad to be "team captain" with doctors, labs, etc., but not a good subject because of my testosterone/stimulant POIS treatment regimen.

I posted this here, publicly, because the more input (from you as well as everyone else here at the forum) the better!

What do you think?   

Judging from what I've seen around the interwebs on fMRI's of brains during orgasm, I'm not sure how well a tool it would be for zeroing in on POIS related structures/causes. I say this because it seems there are very different results from fMRI's of different "normal" people's orgasms, and it appears that doctor's aren't exactly sure yet why that is yet. I may also be biased since my doctor ordered a $18,000 MRI and EKG for my POIS and it showed nothing abnormal. Granted an fMRI shows bloodflow and oxygen level changes within structures of the brain, without a fram of reference or a "what exactly are we looking for" I'm not sure how this might work. I guess if someone did have a pretty good reason, and they were insured, convince their doctor to obtain one of these through insurance just like some of us have with regular MRIs?

i think he might be right about the fmri,if normal people have varying results, we might not have anything concrete to interpret the data with. i personally think that my brain would look normal durning o anyways. somthing like taking a math test(on fmri or mri) before o, and after while in pois, would tell us a great deal about what areas are affected by cognitive dysfuntion. narrowing down what areas are effected by decreased brain activity is the first step in the right direction. another step in the right direction would be to match a pois patient test agian the data from that study(prolactin/dopamine) where the people were hook up to a machine that automatical draws blood at givin intervals before, during, and after orgasm. in this case we would have solid data from that study that we could match our nuero/endocrine chemicals toward.

[demografx]

pois sounds like the perfect subject for an Oprah/Dr. oz special.

Should we all chip in and hire a publicist? Trying to stand out in a stack of 10,000 emails is unlikely to work.

[demografx]

i think he [Defsync] might be right about the fmri,if normal people have varying results, we might not have anything concrete to interpret the data with. i personally think that my brain would look normal during o anyways. somthing like taking a math test(on fmri or mri) before o, and after while in pois, would tell us a great deal about what areas are affected by cognitive dysfuntion. narrowing down what areas are effected by decreased brain activity is the first step in the right direction[. another step in the right direction would be to match a pois patient test agian the data from that study(prolactin/dopamine) where the people were hook up to a machine that automatical draws blood at givin intervals before, during, and after orgasm. in this case we would have solid data from that study that we could match our nuero/endocrine chemicals toward.

[emphasis above mine - demo]

Thank you!

As I wrote, "let's start somewhere"! I'm not "married" to fMRI by any means. I'm just tired of waiting for that institution-in-the-sky to "save us"!

Laurac, can you break that suggestion down to the very next step for us here? Perhaps starting with 1-2 volunteers?

[demografx]

I may also be biased since my doctor ordered a $18,000 MRI and EKG for my POIS and it showed nothing abnormal.

I understand that. My endo ordered a $9,000 (mostly insurance-paid) MRI brain scan of the pituitary and it only revealed that I didn't have tumors. A partially empty sella was found, which meant nothing to the endo as far as suggesting treatment.

But it did keep me on track with testosterone treatment, which the hormonal bloodtests identified as necessary, and was/is a successful POIS treatment for me.

[POIS-SUFFERER]

So whats everyones thoughts now on getting H1N1 shots?

Some people saying people with FM and CFS could be at risk of it....

Thoughts?

PS.

[John21 (OP)]

PS,

So whats everyones thoughts now on getting H1N1 shots?

Some people saying people with FM and CFS could be at risk of it....

Thoughts?

PS.

I plan on getting it, I think everyone in our camp should.

[Finally]

[

So whats everyones thoughts now on getting H1N1 shots?

Some people saying people with FM and CFS could be at risk of it....

Thoughts?

I won't be needing the shot since I had the disease a couple weeks ago.  Usually I get rid of these things in a day or two but It dragged me down for about a week then recovered "slowly".  Brushed my teeth and needed to rest for a half hour.
I do have CFS/fibro. My immune system seems to work well sometimes maybe too well? 

[CertainlyPOIS]

PS,

So whats everyones thoughts now on getting H1N1 shots?

Some people saying people with FM and CFS could be at risk of it....

Thoughts?

PS.

I plan on getting it, I think everyone in our camp should.

I say do it, but if pois is immune related, i say stay away from orgasm for a while, so body dont over react.

[GoingCrazy]

So whats everyones thoughts now on getting H1N1 shots?

Some people saying people with FM and CFS could be at risk of it....

Thoughts?

PS.

I'm not getting it. I see an I Am Legend reality.

[GoingCrazy]

I think someone should try nystatin.

[demografx]

Someone? How about you?

[demografx]

H1N1 vaccine?

Squalene, one of the vaccine components, according to some critics, caused Gulf War 1 symptoms. It was in the anthrax vaccine.

Scary if true!

Can anyone refute that?

I'm staying away. My wife disagrees, thinks the benefit outweighs the risks.

I'm fairly certain that my last flu shot a few years ago made me sick. My GP says it couldn't have. I'm ready to fire yet another GP!

[CertainlyPOIS]

I found more evidence for the immune systmem being cause or at least possible part.
In the article it talks about how it cause cognition problems and fatigue and so on. But the interesting part is that Il-1 increases ACTH and excess release of cortisol is suppose to stop the inflammation response.  But when i did my endocrine test my acth was slightly elevated but cortisol was normal. And I think martinn 88 said his acth was elevated to.
http://ajp.psychiatryonline.org/cgi/content/full/157/5/683
under endocrine effect. long article

Am going to be doing inflammatory test through integrative psychiatry do you guys know if they are trustworthy. i try google search but nothing came up. 

does any body know why lef.org inflammation test is two times that of integrative psychiatry

[CertainlyPOIS]

H1N1vaccine?

Squalene, one of the vaccine components, according to some critics, caused Gulf War 1 symptoms. Scary if true! Can anyone refute that?

I'm staying away. My wife disagrees, thinks the benefit outweighs the risks.

I'm fairly certain that my last flu shot a few years ago made me sick. My GP says it couldn't have. I'm ready to fire yet another GP!
[/quote\
even squalence is can cause gulfwar syndrome i dont think there is enough in it to match what solders experience in gulf war.

[CertainlyPOIS]

am on a roll here guys
 i have been trying to connect that two day high/hyperness/fantastic mental state/tremendous energy to  immune system  and i have found. 
Catecholamines are known to reduce inflammation response and reduce cytokines in body. It is a well known effect in the body.
Catecholamines in excess in body are known to create that "high" effect, could these be how our body returns to normal on the seventh day.

what do you guys think.

http://www3.interscience.wiley.com/journal/120778223/abstract?CRETRY=1&SRETRY=0
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1666138/?page=1
http://www.springerlink.com/content/u16j1143vh3x765v/fulltext.pdf

[Defsync]

am on a roll here guys
 i have been trying to connect that two day high/hyperness/fantastic mental state/tremendous energy to  immune system  and i have found. 
Catecholamines are known to reduce inflammation response and reduce cytokines in body. It is a well known effect in the body.
Catecholamines in excess in body are known to create that "high" effect, could these be how our body returns to normal on the seventh day.

what do you guys think.

http://www3.interscience.wiley.com/journal/120778223/abstract?CRETRY=1&SRETRY=0
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1666138/?page=1
http://www.springerlink.com/content/u16j1143vh3x765v/fulltext.pdf

first and last link are not accessible (?) to me

ill see yer article, and raise you this one:

http://www.sciencemag.org/feature/data/983519.dtl

that says some things like:
"Testosterone treatment reduced the severity of EAE in females with a concomitant increase in TH2 cytokines."

Lets say it is an autoimmune reaction, like MS. There are MANY different types of cytokines that can be good/bad. We'd have to figure out which ones are the cause of POIS for specific targeted treatment. However it looks like testosterone may be a good treatment overall for reducing many of the inflammatory occurrences from these cytokines.

I still have yet to get over to the medical university library. Im itching to wait till I heave health insurance so I can try stuff out if i find anything useful. I definitely am going to get my doctor to prescribe me some Testosterone to see if it works, as some are saying it may.

[John21 (OP)]

Demo,

H1N1vaccine?

Squalene, one of the vaccine components, according to some critics, caused Gulf War 1 symptoms. Scary if true! Can anyone refute that?

Yes.

[demografx]

Even if squalene can cause gulfwar syndrome i dont think there is enough in it to match what solders experience in gulf war.

Some people say H1N1 has more than Gulf War.

[demografx]

John, thank you, I was glad to read that article, I have low regard for the doctor propagating that theory. However, I didn't notice his name in the several that I googled.

I say "glad" because I don't want that theory to be true, thinking about the future of millions of children!

There's a 10 minute video at the CBS and CNN sites, kind of negative, I think. And my wife has seen solid presentations from both sides, and concludes positively.

This all makes me reach for my trusty quarter, flip it in the air and decide on heads or tails decision!

[demografx]

How do you evaluate a debate in which both sides seem to have impressive world-class medical backgrounds?