Author Topic: POIS cure: theory & supplement stack  (Read 46512 times)

Quantum

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Re: POIS cure: theory & supplement stack
« Reply #270 on: May 22, 2018, 08:31:05 AM »
Hey I just joined the forum after reading through this thread.  I think I might try taking the supplements suggested on the original post.  I just had three questions:

1) Is that completely up to date with suggested supplements?

2) I've got severe gluten intolerance and have similar symptoms with POIS.  I wonder if there might not be some connection there.  I know it comes up from time to time around the forum so perhaps I'm not the only one.  That being the case, it sounds like the supplement stack is more of a palliative approach to the problem, rather than stanching this issue at the source.

3) Many members seem to be extremely knowledgeable / medically savvy.  I'm looking for organizations/research institutions dedicated to the research of our affliction.  Is anyone aware of professional efforts to devise treatments?  I'm on the board of a charitable foundation and am selfishly investigating ways to help.

Thanks!

Hi BuckarooBanzai, and welcome to the forum !

1.   Nanna keeps his stack description updated ( original post).  He is experimenting with other things, but those are mentioned in other, separated threads. 

2. There are other members who seems to have a type of POIS responding to a diet change.  You may like to read this thread :  http://poiscenter.com/forums/index.php?topic=2275.msg18450#msg18450 .  Member Going Less Crazy has 100% relief from POIS with his diet.

There are other links to other members' successful diets found in the POIS Types Chart, at type No7: http://poiscenter.com/forums/index.php?topic=2338.msg19448#msg19448

3. This forum have been working continuously, for years, to stimulate research on POIS.  We have gathered a $31000 grant for a study on POIS, and it is currently available through NORD ( National Organization for Rare Diseases).   We actively contact any researcher that knows about POIS, but to date, there is no answer to our Request For Proposal.  You can find more information at http://poiscenter.com/forums/index.php?topic=2462.msg20970#msg20970 .  We actively ask members to let their physician know about our RFP ( see http://poiscenter.com/forums/index.php?topic=426.msg24011#msg24011 )

However, studies on POIS are few and far between ( you can find an updated list here: http://poiscenter.com/forums/index.php?topic=2392.msg20182#msg20182 ).  Research on POIS is quite slow, so we have to be patient and have reasonable expectations ( For my views as to why we have a hard time finding a research team that would go ahead with a study on POIS, see http://poiscenter.com/forums/index.php?topic=426.msg23844#msg23844 ).  So , having some money to invest is not enough, medical research is a business, too.   I hear you may have some funding available for POIS research, that is a great thing !   But we still have to find teams that are willing and interested to work on POIS.   


Let us know of your results with any method you try for your POIS.  Have you been suffering from POIS for a long time?  What are your main symptoms?

Take a look at the wealth of information contained on the forum, and do not hesitate to ask questions and submit ideas and personal observations. 





You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Observer

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Re: POIS cure: theory & supplement stack
« Reply #271 on: May 22, 2018, 08:51:40 AM »
Hey I just joined the forum after reading through this thread.  I think I might try taking the supplements suggested on the original post.  I just had three questions:

1) Is that completely up to date with suggested supplements?

2) I've got severe gluten intolerance and have similar symptoms with POIS.  I wonder if there might not be some connection there.  I know it comes up from time to time around the forum so perhaps I'm not the only one.  That being the case, it sounds like the supplement stack is more of a palliative approach to the problem, rather than stanching this issue at the source.

3) Many members seem to be extremely knowledgeable / medically savvy.  I'm looking for organizations/research institutions dedicated to the research of our affliction.  Is anyone aware of professional efforts to devise treatments?  I'm on the board of a charitable foundation and am selfishly investigating ways to help.

Thanks!

Hello BuckarooBanzai88. As Quantum said, welcome to the forum!

I was wondering how much have you been following your celiac diet. Are you noticing any overall improvement?

BuckarooBanzai88

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Re: POIS cure: theory & supplement stack
« Reply #272 on: May 24, 2018, 10:43:38 PM »
Hi Quantum/Observer,

Thank you so much for all this information!  I saw my doctor today to discuss this for the first time and it was very helpful.

It's also very, very helpful to see that compiled list of remedies folks have had luck with!  I'm reading through them now to see which one to try first.  I'll most certainly share everything I learn with my various investigations.  I'm also probably going to go to the Mayo Clinic to make sure I don't have any underlying condition.  I may try Crowdmed from there just to exhaust all of my resources.

That's interesting to hear about the politics and economy of research.  This is all relatively new to me so I know next to nothing about, well, everything.  Maybe as I learn more, I'll be able to contribute in some meaningful way to the goal of inspiring research.  There too, I'll post anything I find out.


You asked how long I've been dealing with POIS.  I've had underlying depression/anxiety/brain fog from gluten intolerance since I reached puberty (though I didn't know the cause).  Only in 2012 did I really start to investigate why I was having such a hard time.  Long story short, I figured out it was gluten (after a ridiculous procession of doctors) around 2016.  Over 2016 I figured out just how sensitive I am and am now able to avoid it consistently.  When I DO eat gluten, I become suicidal for about three days (extremely depressed, anxious, foggy head, exhausted, irritable), then over the next ~7 days, I slowly regain my equilibrium.  I have nightmares about eating gluten.

But even after I stopped eating gluten (I'm on the extremely sensitive end of the gluten intolerance spectrum so I don't eat out ever, and I only eat what I cook), I realized there were inexplicable bouts of symptoms that were somewhat less severe, but very similar and usually only lasting for something like five days.  More emphasis was on the physical fatigue in these instances.  My normal 2 mile run is nearly impossible on the first day of these sorts of bouts.  I only recently realized these instances coincided, in every single case, with having ejaculated.  The intensity of my symptoms vary, but I haven't established the deciding factor there.  Maybe quantity.  At this point I'm celibate and only eat in alone.  It's like living in a monastery or temple :). Of course I can't very well control what my body does while I'm unconscious.

At any rate, I've rambled here, but that's sort of my story since you and Observer asked.  I'll let you all know (not on this thread since I think it's probably not the right place) if I learn anything new.

Thanks again for the warm welcome. 

Going less Crazy

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Re: POIS cure: theory & supplement stack
« Reply #273 on: May 25, 2018, 02:22:01 AM »
Hi Quantum/Observer,

Thank you so much for all this information!  I saw my doctor today to discuss this for the first time and it was very helpful.

It's also very, very helpful to see that compiled list of remedies folks have had luck with!  I'm reading through them now to see which one to try first.  I'll most certainly share everything I learn with my various investigations.  I'm also probably going to go to the Mayo Clinic to make sure I don't have any underlying condition.  I may try Crowdmed from there just to exhaust all of my resources.

That's interesting to hear about the politics and economy of research.  This is all relatively new to me so I know next to nothing about, well, everything.  Maybe as I learn more, I'll be able to contribute in some meaningful way to the goal of inspiring research.  There too, I'll post anything I find out.


You asked how long I've been dealing with POIS.  I've had underlying depression/anxiety/brain fog from gluten intolerance since I reached puberty (though I didn't know the cause).  Only in 2012 did I really start to investigate why I was having such a hard time.  Long story short, I figured out it was gluten (after a ridiculous procession of doctors) around 2016.  Over 2016 I figured out just how sensitive I am and am now able to avoid it consistently.  When I DO eat gluten, I become suicidal for about three days (extremely depressed, anxious, foggy head, exhausted, irritable), then over the next ~7 days, I slowly regain my equilibrium.  I have nightmares about eating gluten.

But even after I stopped eating gluten (I'm on the extremely sensitive end of the gluten intolerance spectrum so I don't eat out ever, and I only eat what I cook), I realized there were inexplicable bouts of symptoms that were somewhat less severe, but very similar and usually only lasting for something like five days.  More emphasis was on the physical fatigue in these instances.  My normal 2 mile run is nearly impossible on the first day of these sorts of bouts.  I only recently realized these instances coincided, in every single case, with having ejaculated.  The intensity of my symptoms vary, but I haven't established the deciding factor there.  Maybe quantity.  At this point I'm celibate and only eat in alone.  It's like living in a monastery or temple :). Of course I can't very well control what my body does while I'm unconscious.

At any rate, I've rambled here, but that's sort of my story since you and Observer asked.  I'll let you all know (not on this thread since I think it's probably not the right place) if I learn anything new.

Thanks again for the warm welcome.

Do you have celiac disease?  You might benefit going dairy free as well (gluten very similar to casein) and/or starting a food diary... especially if your gut isn't healed you could react to anything, especially grains and dairy.

Source: I have the same problem.  Never truly figured out if it was celiac disease though.
« Last Edit: May 25, 2018, 02:24:15 AM by Going less Crazy »
My POIS 100% managed with modified Paleo Diet (@ diet that 100% manages my pois)Believe my POIS stems from inflammation in the gut. O and stimulation = neuro POIS from inflammation from the gut. Can O freely. Current supplements: tolerase g, ground ginger (microdosing)

nanna1

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Re: POIS cure: theory & supplement stack
« Reply #274 on: May 26, 2018, 03:26:56 PM »
Regarding CLA, I noticed that Examine.com writes [1]:
Quote
CLA does not go well with Resveratrol (Both possess anti-obesity actions, and inhibit each other in exerting them)
Would that warning apply here as well, or only when one wants to lose fat?

[1] https://examine.com/supplements/conjugated-linoleic-acid/
Hi dizzy,

Thanks for your question. I do not know how CLA will affect results from Resveratrol. The bioavailability of CLA is much greater than Resveratrol. So I would imagine that the effects of CLA will dominate if they are taken together. But I do not take resveratrol, so I do not know the answer to your question. But thanks for asking. Hopefully someone else with experience with resveratrol can give better insight.  :)
« Last Edit: May 26, 2018, 03:29:05 PM by nanna1 »

BuckarooBanzai88

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Re: POIS cure: theory & supplement stack
« Reply #275 on: May 30, 2018, 12:19:01 AM »
Do you have celiac disease?  You might benefit going dairy free as well (gluten very similar to casein) and/or starting a food diary... especially if your gut isn't healed you could react to anything, especially grains and dairy.

Source: I have the same problem.  Never truly figured out if it was celiac disease though.

I don't technically have celiac disease.  I have the genes for it, and the sensitivity, but it hasn't ever developed into full blown celiacs.  I've been told by several doctors that I _must_ not eat gluten given my genes.

I don't eat dairy or eggs.  I have a very restricted diet and I only eat home cooked from trusted sources.  I definitely have some sort of leaky gut going that re-surfaces whenever i accidentally eat gluten.

Feel free to PM me if you have more questions about my specific condition.  I feel guilty lingering on this particular thread since it's about nanna's stack.

Muon

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Re: POIS cure: theory & supplement stack
« Reply #276 on: May 30, 2018, 08:46:52 AM »
I have the genes for it, and the sensitivity, but it hasn't ever developed into full blown celiacs.  I've been told by several doctors that I _must_ not eat gluten given my genes.

What genes?


fernab

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Re: POIS cure: theory & supplement stack
« Reply #277 on: May 30, 2018, 11:17:28 AM »
Hi, I suppose it is about DQ2 and DQ8 genes.
It also seems in my case, that some antibodies linked to celiac desease are increasing since I began with POIS.

My immunologist told me that once you are suffering an autoinmune desease you become more prone to suffer other.

I have recently got sores on my tongue. I went to the maxillofacial to see them. He told me that they are typical sores of an autoimmune disease.

although all this does not prove anything. all this makes me suspect that POIS is also an autoimmune disease.

Hopeoneday

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Re: POIS cure: theory & supplement stack
« Reply #278 on: May 30, 2018, 01:13:35 PM »
Definitly could be autoimune, an who knows what else involved. The prove for me on autoimune for some people is diet, check on GLC tread.
Dr-pois.

fernab

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Re: POIS cure: theory & supplement stack
« Reply #279 on: May 30, 2018, 04:24:44 PM »
Sorry, what do you mean by GLC?

swell

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Re: POIS cure: theory & supplement stack
« Reply #280 on: May 30, 2018, 08:49:41 PM »
So I been quiet and thought to give good news to all.  I thought to have finally found my POIS solution, after many many temporary victories over last decade.  For last 2 months, a powerful drug cocktail containing active Glutathione 1000 mg  (combined with strong pre-cursor to Glutathione pack of Cystein, Glutamine, Glycine, Alpha Lipoic)  it worked as magic potion.  First month POIS 100% gone despite getting 4-5 o's in a single day.  In one month, I had about 16 pois free episodes of o's.  However, since then its effectiveness has slowly waned.  Last week it was not effective at all.  Experience has taught me that POIS is very very tricky and it will trick you with your somatic processes, like your brain can control POIS if you have strength and strong belief.  But this tahiti does not last long and your brain gives up eventually and back you are to your sick state where POIS manifests for 7 days.  So I am back to drawing board.

Questions:
1.  Has anyone tried for pois, 'Viagra' or similar vasodilator with success or failure?
2.  Has anyone tried "SOD" - Superoxide dismutases?   
« Last Edit: May 31, 2018, 12:43:34 AM by swell »

demografx

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Re: POIS cure: theory & supplement stack
« Reply #281 on: May 31, 2018, 02:16:59 AM »
Sorry, what do you mean by GLC?
Going Less Crazy, a POISCenter Member.
Usually have major 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 associated with it.

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

fernab

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Re: POIS cure: theory & supplement stack
« Reply #282 on: May 31, 2018, 04:09:50 PM »
Sorry, what do you mean by GLC?
Going Less Crazy, a POISCenter Member.

Thank you Demo!

Quantum

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Re: POIS cure: theory & supplement stack
« Reply #283 on: May 31, 2018, 04:24:28 PM »
So I been quiet and thought to give good news to all.  I thought to have finally found my POIS solution, after many many temporary victories over last decade.  For last 2 months, a powerful drug cocktail containing active Glutathione 1000 mg  (combined with strong pre-cursor to Glutathione pack of Cystein, Glutamine, Glycine, Alpha Lipoic)  it worked as magic potion.  First month POIS 100% gone despite getting 4-5 o's in a single day.  In one month, I had about 16 pois free episodes of o's.  However, since then its effectiveness has slowly waned.  Last week it was not effective at all.  Experience has taught me that POIS is very very tricky and it will trick you with your somatic processes, like your brain can control POIS if you have strength and strong belief.  But this tahiti does not last long and your brain gives up eventually and back you are to your sick state where POIS manifests for 7 days.  So I am back to drawing board.

Questions:
1.  Has anyone tried for pois, 'Viagra' or similar vasodilator with success or failure?
2.  Has anyone tried "SOD" - Superoxide dismutases?

Hi Swell,

Sorry to hear that you treatment stopped working.  That happens, so before concluding to long term effectiveness, it takes 2 to 3 months of reliable success.

About Viagra, there have been some mention of it, but no definite case of long term success.  If you have ED or psychological inhibition, or you have less POIS when alone ( masturbation), sildenafil may ease the process in the context of a relation with another person, and lower POIS ( just an hypothesis, here).  However, it has many possible side effects, and that is why it is on prescription only, so consult a health professional before using it.


I don't think there is any member that reported on using SOD on the forum, and a search from home page does not bring up anything substantial for superoxyde and/or dismutase.
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

nanna1

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Re: POIS cure: theory & supplement stack
« Reply #284 on: June 01, 2018, 01:19:19 PM »
Hi Swell,

  From my understanding, Superoxide dimutase (SOD) is a really large protein that gets digested in the stomach into smaller peptides and amino acids. I don't think any of the SOD gets absorbed through the intestines due to its large size and protein digestion.

  SOD is made by the body from zinc, copper and manganese. So a mineral supplement containing zinc and copper and maybe some manganese should increase your SOD levels.

  Also, most of the glutathione enzymes require selenium. If there is a selenium deficiency, glutathione will have little effect. So maybe sodium selenite is a good mineral to add to the glutathione stack.

  I notice that you take glycine and cysteine. These are both metal chelators meaning that they decrease/deplete minerals in your body. It could be that restoring minerals (copper, zinc, manganese, selenium, etc...) could restore your previous results. These are just some possible reasons. I wish you well!
« Last Edit: June 01, 2018, 02:40:23 PM by nanna1 »