Author Topic: Free Flow Discussion about POIS  (Read 583071 times)

Ccconfucius

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Re: This may seem like a familar place.
« Reply #105 on: July 25, 2012, 05:40:55 PM »
anybody interested in doing lit review on what has helped to find something useful.  we will do search using google scholar instead of websites.
something we can do while waiting for reasearch.

Stef

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"Medical Mavericks"
« Reply #106 on: July 25, 2012, 06:55:39 PM »
Hi All,

The following article, entitled, Medical Mavericks, came my way through NORD today, and I thought it might be of interest to you. It's not about POIS -- but I think you all might be able to relate to it. I thought of you all immediately!


FYI, they refer to an online community called, "Patients Like Me," -- one of the outstanding patient online communities.  If you're interested in checking their site, just for the heck of it, the web address is www.patientslikeme.com.

Copied and pasted from the online medical journal, The Scientist, July 1, 2012:

"Eric Valor used to be an avid surfer, catching waves off the California coast near his home in Santa Cruz every weekend, and occasionally early in the morning before work. But in October 2004, his left foot started misbehaving, failing to find the correct position on his surfboard when Valor popped to his feet. "The foot would drag on takeoff, resulting in poor placement and subsequent wipe-out," he recalls.

After a series of minor muscle twitches, his dragging foot was the last straw, that finally got him to the doctor. In April 2005, Valor was diagnosed with amyotrophic lateral sclerosis (ALS). By that fall, his surfing days were over.

Valor is now paralyzed from the neck down, and he breathes with the help of a respirator. But he's not giving up. In June 2010, he learned of an experimental ALS drug called NP001, being developed by Palo Alto-based Neuraltus Pharmaceuticals. Then just beginning Phase I trials, the drug targets ALS patients' overactive immune cells, attempting to reduce the chronic neuroinflammation associated with the disease. It seemed promising to Valor, but unfortunately, his disease was too advanced for him to qualify for the trial. 'I made various attempts to get [enrolled], but failed,' says Valor, who responded to The Scientist via e-mail because his ventilator limits his speech.

If he couldn't participate in the trial, maybe he could get the drug another way, Valor reasoned. After an exhaustive literature search on PubMed, he identified the drug's cruder precursor as WF10, which is available for purchase abroad. But he quickly learned that importing it from Thailand would cost more than $12,000 for a year's supply. He then set out to see if he could get his hands on what he suspected, based on a literature search and a 2006 patent tracked down by fellow ALS patient and friend Rob Tison was the active ingredient of NP001: sodium chlorite, which is used in water-purification kits for campers and in municipal water treatment.

Last June, Valor began taking oral doses of the chemical, which is not approved for the treatment of any disease. And he thinks it's working. 'I have improved breathing, which makes transfers [off his ventilator] much more comfortable,' Valor says. 'My voice is louder and speech somewhat clearer. I am able to flex muscles that were previously still (though not enough for useful movement).'

At first, Valor didn't tell other ALS patients about his experimentation, hoping to first establish that it was safe, but by September, it had leaked, he says. Medical physicist and ALS patient Ben Harris, who was enrolled in the NP001 trial, was the one to get the ball rolling. NP001 had improved his strength, speech, breathing, and ability to swallow, and he wanted to keep taking the drug after his participation in the trial ended. 'The more I learned about [sodium chlorite], the more excited I got, and I felt it was too important to keep a secret,' says Harris, who also responded to questions via e-mail due to limitations associated with his disease. So he started a discussion thread on the website of Cambridge, Massachusetts-based biotech ALS Therapy Development Institute (ALS TDI), sparking widespread interest that helped launch the do-it-yourself (DIY) trial. Now more than two dozen other ALS patients are taking oral sodium chlorite, and recording their results on the social networking site PatientsLikeMe.

It's not the first time PatientsLikeMe has hosted this sort of DIY experiment. This is kind of an ongoing process on our site, says company co-founder and chairman Jamie Heywood, a mechanical engineer turned biomedical researcher who also founded ALS TDI in 1999, after his brother was diagnosed with the disorder. Just last year, for example, Heywood and his colleagues published an analysis of data reported on PatientsLikeMe by ALS patients taking lithium carbonate, a chemical approved for the treatment of bipolar disorder (Nat Biotech, 29:411-14, 2011).

'But this sodium chlorite case is particularly interesting and radical in many ways,' Heywood says. People are buying [sodium chlorite] from chemical companies; 'they're] not buying a human therapeutic.' Furthermore, most patients reporting their data on PatientsLikeMe are taking sodium chlorite orally, whereas Neuraltus is giving patients NP001 intravenously. And Heywood is still not sure if sodium chlorite is the true active ingredient of NP001. Without question in ALS, this is the biggest topic of conversation that we as researchers [and doctors] are talking about right now," Heywood says.

But the reports on PatientsLikeMe have put Heywood in a tough position. 'On the one hand, I think there's a moral obligation to deliver value in real time,' he says, looking at an analysis of the data on his computer screen. 'On the other hand, I know that it will be misinterpreted by many people,' he laments. 'The hard question for us is, What's the right thing for us to do? How do we share that information?'

Fortunately, the risk is moderate, Heywood believes, as do the patients taking sodium chlorite, most of whom have done some research before ingesting the chemical. I have done hundreds of hours of research to prove to myself that what I am doing is safe, says Harris. 'Moreover, if you add up the time spent by other forum contributors, we are probably talking about thousands of hours. . . .The story is not about a few desperate people with a terminal illness grasping for anything. . . .This is a solid scientific venture, it just so happens it is being done outside of an academic institution."


So -- Keep doing your research (carefully and safely)!!  And keep posting about it!!  You never know from where answers will spring forth!

Stef
« Last Edit: July 26, 2012, 10:12:36 AM by nordnurse »

demografx

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Re: This may seem like a familar place.
« Reply #107 on: July 26, 2012, 11:27:12 PM »
Thank you, Stef! :)
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familar place.
« Reply #108 on: July 28, 2012, 04:13:29 PM »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familar place.
« Reply #109 on: July 28, 2012, 04:27:14 PM »

Folks, as they say, it's complicated having two forums and having to repeat!

We have to unite under one forum, and THIS one is ours.

The other one is starting to restrict us. It is a forum that is read by women and children and they generally don't like sexual content.

They have let it go, but there are those who would prefer NOT to have a POIS thread over there.

We can't modify code, do back ups, add chats or enhance it. It is restricted to one single thread.

We are our own bosses here, we have freedom of movement and capacity do build and create.

Please unite over here.

The days of NSF are passing.

Thank you.




Thank you, Daveman!!
Demo




« Last Edit: July 28, 2012, 04:30:31 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familar place.
« Reply #110 on: July 30, 2012, 05:35:06 PM »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

tantalus

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Re: This may seem like a familar place.
« Reply #111 on: July 31, 2012, 06:51:24 PM »
just a short Hi to all. I have been quiet for a week. Have some very personal letters to write to my doctors, so no much  time for the forum as before. i got a verry friendly letter from member Ali, in which he apologises fornot been here so long and therefore never seen my private mail. This kind of PM's  make me feel warmly welcomed. indeed the familiar feel. Well guys ALI is back on the forum. Welcome ALI!  :-*...........My allergist is on holiday . The last time we discussed the forum. I asked him questions you did asked here, bur never got sufficient replies. Later one I will write his answers here. About Niacin....he tends to believe Niacin can block pois in a certain grade. But....Not because of any strictly pharmaceutical effect in special, but more because the Niacin stress [flush) substitutes and overpowers the pois stress itself.  So would self stimulated pain  do also.

This brings me to the question whether  sadomasochistic sex would sometimes  help lowering the pois . Intriguing question , dont you agree?
Well, boringly I dont have SM experiences so I can not tell if it might influence pois postive. BUT !!! I did read a post on this forum subject??, i which a person claimed he did have less pois effect when he stimulates pain after the orgasm. [forgive me if i did read or quote wrong] This seems to state my theoretical guess. In my sneakiest fantasies, i see you all ironing your balls after today ;) i will wait till others do the experiment. ;D  

I have now very different ideas about the so called  'flagellantes' [monks who whipped themselves for getting bonus points in heaven}, maybe they just had pois , and wanted to have just more fun  without the cause and effect spiral'. ::)

I have tried 2 times Niacin now. 100mg and 150 mg . Ye,s it DOES have effect. Don't go into details now. Must repeat the same circumstances first a view times.
One of the first astonishing observations is ....NO RUNNING NOSE after 50 80 minutes after ejaculating in both sessions !. STRANGE!! The second time i used niacin i did do it wrong. So,...... the other Niacine sessions  must be repeated first. Also I had more times orgasms the days after I used a dosage, its not convincing then to compare he two sessions in terms of pois relieve.      

Will be continued.
« Last Edit: August 01, 2012, 10:30:37 AM by tantalus »
4 years desensitized, health progr. average 70%  top 90%, ,overreaction stops 3X (herpes+meningeal irritation, sideeffects towards end ( hyperacusis), stopped at 4to1, retrograde after stop,re-entry soon. negative progesterone effect pois. . (new supervised med. trial planned soon) Niacin not tried

lauracostis

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Re: "Medical Mavericks"
« Reply #112 on: August 01, 2012, 05:04:32 PM »
Hi All,

The following article, entitled, Medical Mavericks, came my way through NORD today, and I thought it might be of interest to you. It's not about POIS -- but I think you all might be able to relate to it. I thought of you all immediately!


FYI, they refer to an online community called, "Patients Like Me," -- one of the outstanding patient online communities.  If you're interested in checking their site, just for the heck of it, the web address is www.patientslikeme.com.

Copied and pasted from the online medical journal, The Scientist, July 1, 2012:

"Eric Valor used to be an avid surfer, catching waves off the California coast near his home in Santa Cruz every weekend, and occasionally early in the morning before work. But in October 2004, his left foot started misbehaving, failing to find the correct position on his surfboard when Valor popped to his feet. "The foot would drag on takeoff, resulting in poor placement and subsequent wipe-out," he recalls.

After a series of minor muscle twitches, his dragging foot was the last straw, that finally got him to the doctor. In April 2005, Valor was diagnosed with amyotrophic lateral sclerosis (ALS). By that fall, his surfing days were over.

Valor is now paralyzed from the neck down, and he breathes with the help of a respirator. But he's not giving up. In June 2010, he learned of an experimental ALS drug called NP001, being developed by Palo Alto-based Neuraltus Pharmaceuticals. Then just beginning Phase I trials, the drug targets ALS patients' overactive immune cells, attempting to reduce the chronic neuroinflammation associated with the disease. It seemed promising to Valor, but unfortunately, his disease was too advanced for him to qualify for the trial. 'I made various attempts to get [enrolled], but failed,' says Valor, who responded to The Scientist via e-mail because his ventilator limits his speech.

If he couldn't participate in the trial, maybe he could get the drug another way, Valor reasoned. After an exhaustive literature search on PubMed, he identified the drug's cruder precursor as WF10, which is available for purchase abroad. But he quickly learned that importing it from Thailand would cost more than $12,000 for a year's supply. He then set out to see if he could get his hands on what he suspected, based on a literature search and a 2006 patent tracked down by fellow ALS patient and friend Rob Tison was the active ingredient of NP001: sodium chlorite, which is used in water-purification kits for campers and in municipal water treatment.

Last June, Valor began taking oral doses of the chemical, which is not approved for the treatment of any disease. And he thinks it's working. 'I have improved breathing, which makes transfers [off his ventilator] much more comfortable,' Valor says. 'My voice is louder and speech somewhat clearer. I am able to flex muscles that were previously still (though not enough for useful movement).'

At first, Valor didn't tell other ALS patients about his experimentation, hoping to first establish that it was safe, but by September, it had leaked, he says. Medical physicist and ALS patient Ben Harris, who was enrolled in the NP001 trial, was the one to get the ball rolling. NP001 had improved his strength, speech, breathing, and ability to swallow, and he wanted to keep taking the drug after his participation in the trial ended. 'The more I learned about [sodium chlorite], the more excited I got, and I felt it was too important to keep a secret,' says Harris, who also responded to questions via e-mail due to limitations associated with his disease. So he started a discussion thread on the website of Cambridge, Massachusetts-based biotech ALS Therapy Development Institute (ALS TDI), sparking widespread interest that helped launch the do-it-yourself (DIY) trial. Now more than two dozen other ALS patients are taking oral sodium chlorite, and recording their results on the social networking site PatientsLikeMe.

It's not the first time PatientsLikeMe has hosted this sort of DIY experiment. This is kind of an ongoing process on our site, says company co-founder and chairman Jamie Heywood, a mechanical engineer turned biomedical researcher who also founded ALS TDI in 1999, after his brother was diagnosed with the disorder. Just last year, for example, Heywood and his colleagues published an analysis of data reported on PatientsLikeMe by ALS patients taking lithium carbonate, a chemical approved for the treatment of bipolar disorder (Nat Biotech, 29:411-14, 2011).

'But this sodium chlorite case is particularly interesting and radical in many ways,' Heywood says. People are buying [sodium chlorite] from chemical companies; 'they're] not buying a human therapeutic.' Furthermore, most patients reporting their data on PatientsLikeMe are taking sodium chlorite orally, whereas Neuraltus is giving patients NP001 intravenously. And Heywood is still not sure if sodium chlorite is the true active ingredient of NP001. Without question in ALS, this is the biggest topic of conversation that we as researchers [and doctors] are talking about right now," Heywood says.

But the reports on PatientsLikeMe have put Heywood in a tough position. 'On the one hand, I think there's a moral obligation to deliver value in real time,' he says, looking at an analysis of the data on his computer screen. 'On the other hand, I know that it will be misinterpreted by many people,' he laments. 'The hard question for us is, What's the right thing for us to do? How do we share that information?'

Fortunately, the risk is moderate, Heywood believes, as do the patients taking sodium chlorite, most of whom have done some research before ingesting the chemical. I have done hundreds of hours of research to prove to myself that what I am doing is safe, says Harris. 'Moreover, if you add up the time spent by other forum contributors, we are probably talking about thousands of hours. . . .The story is not about a few desperate people with a terminal illness grasping for anything. . . .This is a solid scientific venture, it just so happens it is being done outside of an academic institution."


So -- Keep doing your research (carefully and safely)!!  And keep posting about it!!  You never know from where answers will spring forth!

Stef
very interesting to read, my father died of ALS. 

Stef

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Re: Medical Mavericks/ALS
« Reply #113 on: August 01, 2012, 05:58:35 PM »
lauracostis,

I am soooooo sorry to hear that your dad died of this horrific disease!  Please accept my heartfelt condolences -- I really do mean that, regardless of how long ago this might have happened.

ALS is a MONSTER...I cannot even begin to imagine what your dad's illness was like for you and your family (and of course, for him).  My husband and I knew two people who died from it, and have been involved in the ALS Society's fund raisers for the past three years.

You're likely familiar with the online community, Patients Like Me

For the benefit of others reading this, Patients Like Me was started by three MIT engineers in 2004. One of them had a 29-year-old brother with ALS -- and they wanted to connect with other ALS sufferers while also building "a health data-sharing platform" for ALS  patients -- collect all the research into one place (sound familiar?). 

That brother eventually died of ALS, but Patients Like Me was continued, and now serves patients with many different conditions.  It's an excellent site, in my opinion.

At any rate, lauracostis, I'm truly sorry about your dad.

Stef

demografx

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Re: This may seem like a familar place.
« Reply #114 on: August 01, 2012, 06:53:01 PM »
Laurac, hi, great to see you again :)
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familar place.
« Reply #115 on: August 02, 2012, 05:41:09 PM »



$9,270.00 $9,350.00 $10,272.00 $11,002.00 raised!   
THANK YOU TO THE RETURNING MONTHLY DONOR!!!!
towards our $33,500 goal.


Click here to CURE POIS:





Click here to read more about The POIS Medical Fund








« Last Edit: August 14, 2012, 02:04:22 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

amijgoro

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Re: This may seem like a familar place.
« Reply #116 on: August 03, 2012, 07:26:05 AM »
Hi again, 

Don't know if you guys remember me (hope you do). I posted a short while back on nsf a message talking about my constant pois and the horrible symptoms it's accompanied with. During the past few months in which time I have learned about pois and the triggers to it, I've stopped masturbating. Going celibate wasn't enough to stop the symptoms though. I would have pois symptoms constantly. I've realized the constant pois was being caused by physical contact to the penis. Any simple and light touch including the rubbing of my boxers can trigger it. The worst symptoms it causes is awful cognitive disfunction and immediate physical fatigue that can actually put me to sleep. The moment this happens I also have the urgent need to pee which ends up all foamy in the toilet. I went to a urologist who had no idea what i was talking about. Although in the end he did give me a valuable piece Of information which is the reason behind the foamy urine. It could be explained by semen in the mixture of my pee, meaning semen is somehow getting into my bladder which is causing my symptoms (because of pois of corse). This phenomenon is called retrograde ejaculation. It happens when the shutter between the bladder and prostate doesn't shut tight enough. 
Stimulating the penis causes sperm to be released and enter the bladder through the weakened shutter or actually makes the shutter weak and allows a flow of semen into the bladder.

I can't take feeling like this every day anymore! 
Help regarding treatment would be most welcome.

Daveman

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Re: This may seem like a familar place.
« Reply #117 on: August 03, 2012, 07:58:31 AM »
Hi again, 

Don't know if you guys remember me (hope you do). I posted a short while back on nsf a message talking about my constant pois and the horrible symptoms it's accompanied with. During the past few months in which time I have learned about pois and the triggers to it, I've stopped masturbating. Going celibate wasn't enough to stop the symptoms though. I would have pois symptoms constantly. I've realized the constant pois was being caused by physical contact to the penis. Any simple and light touch including the rubbing of my boxers can trigger it. The worst symptoms it causes is awful cognitive disfunction and immediate physical fatigue that can actually put me to sleep. The moment this happens I also have the urgent need to pee which ends up all foamy in the toilet. I went to a urologist who had no idea what i was talking about. Although in the end he did give me a valuable piece Of information which is the reason behind the foamy urine. It could be explained by semen in the mixture of my pee, meaning semen is somehow getting into my bladder which is causing my symptoms (because of pois of corse). This phenomenon is called retrograde ejaculation. It happens when the shutter between the bladder and prostate doesn't shut tight enough. 
Stimulating the penis causes sperm to be released and enter the bladder through the weakened shutter or actually makes the shutter weak and allows a flow of semen into the bladder.

I can't take feeling like this every day anymore! 
Help regarding treatment would be most welcome.


You would probably be a perfect candidate for the below:
http://poiscenter.com/forums/index.php?topic=468.0

Do what you can to give it a try. The regime is a little complex, but the thread indicated simplifies it as much as possible. It's WORTH it to be free.

What  your doctor says makes a lot of sense. If I get retrograde ejaculation, my POIS is a lot worse. Anything that "backs up" the pressure during the orgasm
can make it worse.

There's GOOD potential for the vitamin regime mentioned. It even works for those who haven't had success with niacin.

Good luck.
WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

Daveman

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Re: This may seem like a familar place.
« Reply #118 on: August 03, 2012, 09:00:24 AM »
Tantalus,

Your allergist says:

"..he tends to believe Niacin can block pois in a certain grade. But....Not because of any strictly pharmaceutical effect in special, but more because the Niacin stress [flush) substitutes and overpowers the pois stress itself."

We ourselves have more evidence that there is a good solid pharmaceutical effect that he probably has. I sense that he is guessing, even though it may be an educated guess. But we here on this very forum, have shown a potential theory with respect to it's pharmaceutical effects, and gone forward to even demonstrate the reality and affectivity of the theory. You may be following the posts on this thread. http://poiscenter.com/forums/index.php?topic=468.0

The idea is not to criticize YOUR allergist, but just make a common note, that most doctors are poorly connected to POIS problems.

I cannot imagine how he thinks that the niacin flush is anywhere NEAR stress of POIS to be able to "overpower" it. He must not understand what POIS is and how much we actually suffer with it.

Sorry to sound negative, but we have to take a stand! We have POIS and it is serious!

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

fidalgo

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Re: This may seem like a familar place.
« Reply #119 on: August 03, 2012, 10:15:16 AM »
Tantalus,

Your allergist says:

"..he tends to believe Niacin can block pois in a certain grade. But....Not because of any strictly pharmaceutical effect in special, but more because the Niacin stress [flush) substitutes and overpowers the pois stress itself."

We ourselves have more evidence that there is a good solid pharmaceutical effect that he probably has. I sense that he is guessing, even though it may be an educated guess. But we here on this very forum, have shown a potential theory with respect to it's pharmaceutical effects, and gone forward to even demonstrate the reality and affectivity of the theory. You may be following the posts on this thread. http://poiscenter.com/forums/index.php?topic=468.0

The idea is not to criticize YOUR allergist, but just make a common note, that most doctors are poorly connected to POIS problems.

I cannot imagine how he thinks that the niacin flush is anywhere NEAR stress of POIS to be able to "overpower" it. He must not understand what POIS is and how much we actually suffer with it.

Sorry to sound negative, but we have to take a stand! We have POIS and it is serious!



The only time I have sucess with niacin I didn't have the flush. So, I think it's not the flush that help POIS, but the niacin itself...