[Kima]

B-JIM    It looks like  IDO thing  broke down a lot of  your brain  cells lately.


Most ceruloplasmin  levels on the russian forum were  below the middle of the range.  Herman never said they should be below the range, but  many people have it near or below 20. Mine is 16

[nathan123]

Hi,

We finally reached the success with Gaurav's POIS and now he completely cures from POIS. But cause for his POIS is completely different from mine where for me it is due to accumulation of toxins in the body and the same was cleared through panchakarma process.

Whereas as updated earlier, we (my dr.kumar's suggestion) tried panchakarma treatment on Gaurav, but found 40% result and his POIS bounce back after two months. Again in coordination with Gaurav's physician, Dr.Kumar suspected nervous system imbalance is the reason for the Gaurav's POIS. For this he suggested various medicines and nothing worked on him.  Finally, Gaurav found Wisdom Tooth in both sides of his lower jaw and apparently there was no physical pain. In X-ray it is found that the Wisdom tooth gone depth and due to this there was a imbalance in nervous system function of Gaurav.  One month back, he removed his Wisdom Tooth by extraction (small dental surgery) and now he is out of POIS.   This is the result of Gaurav's status.   


Hence, as updated earlier, my POIS is due to toxins and Gaurav's POIS is due to Wisdom tooth.  Further, as posted earlier, in our city we have found another 10 people suffering from migraine headache felt increase in discomfort after orgasm and we suspect this is also POIS as due to lack of awareness, they are treating the same as migraine headache. Out of which one person came volunteerly came for treatment and now he also cured from the problem. His cause for POIS was entirely different from mine and Gaurav. I would post the result after some time as now we can discuss on the result of Gaurav and on Wisdom Tooth.

Regards,

Nathan.

[GDRTW]

Thanks you Nathan123. That is really really interesting and compounds my suspicions that we all have our won underlying causes. I guess we need to go trough a check list of potentials..lyme disease etc...Looking forward to finally getting around to a hair test in the next few weeks.

[Kima]

Any infection leads to robbery tryptophan (because of this pois)

[Kima]

Just wanted to post  here what Herman wrote on the  russian forum.ALL chronic infections and viruses, including teeth  will  lead to  the increase in IDO.Potential cure for POIS is rosmarinic acid which is IDO inhibitor.

[gondal4]

Kima what a mentally ill person you are.first you said ypu were cured by herman then you said that herman knows nothing about POIS now you both are back.
yOU bOTH ARE mentally ill people who know nothing.SICK

[Kima]

Gonda. I said Germany not Herman, you idiot. I have no idea if Hermans cure works , he never treated me. I am  getting my hairtest tommorow from ARL, but some people on the russian forum are feeling much better in 2 days on his diet already.Too bad he wont help you , morons  any more. HAHA

[gondal4]

It is strange to me Selenium-methionine helps relieve the symptoms of pois

Kima what an idiot u r,u said u were cured by germany?

Treatment Herman, does not help
Herman knows no cure pois
He conducted experiments on us


Kima,Russia

See now u IDIOT

[gondal4]

Gonda. I said Germany not Herman, you idiot. I have no idea if Hermans cure works , he never treated me. I am  getting my hairtest tommorow from ARL, but some people on the russian forum are feeling much better in 2 days on his diet already.Too bad he wont help you , morons  any more. HAHA

which post TO B BELIEVED KIMA IS herman

[kurtosis]

I'll probably regret posting this because posts tend to turn into wars here but fatty acid metabolism, Idoleamine, NAD levels, use of niacin, nicotinamide and nicotinamide riboside for treatment of IDO dysregulation and auto-immune diseases are all related.
Read  http://www.ncbi.nlm.nih.gov/pubmed/17430113
Here's an extract

"Collectively these observations support the idea that autoimmune disease may in part be considered as localised pellagra manifesting symptoms particular to the inflamed target tissues."

And another

"Distinct among the NAD precursors, nicotinic acid specifically activates the g-protein coupled receptor (GPCR) GPR109a to produce the IDO-inducing tolerogenic prostaglandins PGE(2) and PGD(2). Next, PGD(2) is converted to the anti-inflammatory prostaglandin, 15d-PGJ(2)"

So long as you don't have fatty acid synthesis issues of course. In which case you'd adjust your diet with different levels of Omega 3 v Omega 6 to influence synthesis of anti- rather than pro-inflammatory prostaglandins.

In any event, I think that niacin works for POIS by increasing 15d-PGJ(2) levels following the PGD2 release (prostaglandins) which we call "the flush". Niacin didn't work for everybody and I think the reason is fatty acid synthesis impairment and the PGD2 to 15d-PGJ(2) conversion step.

Not be alarmist but there is an extreme form of IDO dysregulation which appears to have a genetic link.

"The importance of IDO dysregulation manifest as autoimmune pellagric dementia is genetically illustrated for Nasu-Hakola Disease (or PLOSL), which is caused by a mutation in the IDO antagonizing genes TYROBP/DAP12 or TREM2. Loss of function leads to psychotic symptoms rapidly progressing to presenile dementia likely due to unchecked increases in microglial IDO expression, which depletes neurons of tryptophan causing neurodegeneration"

I'm not suggesting anyone has this but some of us have reported moments of symptoms similar to what NHD suffers experience. Psychosis, paranoia and signs of demential such as extreme forgetfulness.

They conclude with

Alternatively the direct targeting of the non-redox NAD-dependent proteins using resveratrol to activate SIRT1 or PJ34 in order to inhibit PARP1 and prevent autoimmune pathogenesis are also given consideration.

I'd argue that nicotinamide riboside (NR) may do both; increase NAD & activate SIRT1 as a result. However, that needs further testing outside the mice model which is promising.  See

Whey protein contains both tryptophan and NR in relatively easy to digest form. It's possible that IDO and FADS2 combine in some suffers to produce localised pellagra and an autoimmune reaction. In some sufferers niacin alone would alleviate some of the symptoms or even sufficient whey protein but in others it may take a combination of supplements to modify prostaglandin synthesis such that it's anti rather than pro-inflammatory. Elevated PGE1 prostaglandins have been found in schizophrenic patients.
Herman is right that zinc is one of the minerals that help reduce inflammation. One way is by encouraging supplementary GLA to be converted to DGLA (anti-inflammatory) rather than arachidonic acid (AA) which is pro-inflammatory. See http://umm.edu/health/medical/altmed/supplement/gammalinolenic-acid
Other nutrients required to support DGLA synthesis are magnesium, b6, niacin/b3 and vitamin C.

My recollection from emails from POIS sufferers in the past is that some claimed schizophrenic-like symptoms. I have a schizophrenic relative and I think these are related too. All the secrets are in the genome imho.
I also remember that Daveman who was very pro-Niacin mentioned eating some seeds that were high in essential fatty acids. Would be interesting to compare the fatty-acid profile of the diets of niacin responders and non-responders.

So this theory is a bit out there, a bit on the fringe of medical knowledge but possible. Anyway, that was part of the theory I was wondering about in my previous post and I think some doctor somewhere should follow up on it. I can't prove any of this but I can show a link to bowel disease and SIBO.

I'm sure Herman will be delighted to read this even though he's "gone" , I have a homozygous IDO1 mutation with the following Google NSP search page
http://scholar.google.com/scholar?q=rs12545877

I'll post the citations below for those disinclined to click a link.

[CITATION] W1236 NOD2 Mutations Compromise Host Defense Mechanisms to Enteric Bacteria as Shown by Decreased NF-kB in Human B Cells After Muramyl …
Z Lin, G John, JP Hegarty, A Berg, TY Li, DM Pastor… - …, 2010 - WB Saunders
All 2 versions Cite
[CITATION] W1234 Non-Synonymous Polymorphisms in the Tryptophan Catabolism Pathway: Correlation to Crohn's Disease Risk and Phenotype
A Lee, N Gupta, WF Stenson, MA Ciorba - Gastroenterology, 2010 - WB Saunders
All 2 versions Cite
[CITATION] W1233 Genotype-Subphenotype Correlations Between Established Crohn's Disease Risk Alleles and Disease Location
A Lee, TZ Li, H Chen, T Zhang, W Zhu, E Li - Gastroenterology, 2010 - WB Saunders
All 2 versions Cite
[CITATION] W1235 Inflammatory Bowel Disease (IBD)-Associated DNA Methylation in B Cells From IBD Patients
Z Lin, JP Hegarty, W Yu, JA Cappel, X Chen… - …, 2010 - WB Saunders
All 2 versions Cite
[CITATION] W1237 Haptoglobin Poymorphisms are Associated With Ulcerative Colitis and Crohn's Disease
L Marquez, I Cleynen, K Machiels, S Organe… - …, 2010 - WB Saunders
All 2 versions Cite
The human indoleamine 2, 3-dioxygenase gene and related human genes
MF Murray - Current drug metabolism, 2007 - ingentaconnect.com
... 1 rs35059413 G124A (unknown) first A 4 T Exon 1, nonsynonymous 2 rs35099072 G344A
(unknown) second R 77 H Exon 3, nonsynonymous 3 rs12545877 G428A (G) second R 105
K Exon 4, nonsynonymous 4 rs4463407 T434G (T) second I 107 S Exon 4, nonsynonymous ...
Cited by 23 Related articles All 4 versions Cite
[CITATION] W1232 A Highly Significant Association of Tumor Necrosis Factor Superfamily Member 15 Gene With Inflammatory Bowel Disease in China
F Zhou, T Jiang, L Ge, Z Chen, J Zhao, B Xia - Gastroenterology, 2010 - WB Saunders
All 2 versions Cite

That's why I take the stuff I take, the comment about "preventative so POIS doesn't recur". IBD can lead to SIBO because the inflammation affects a cleansing reflex that kills bad gut bacteria, inter alia other reasons. I didn't think it was particularly relevant to discuss any of this before because it's not something you can go to your doctor and say "hey, I'd like a treatment for X" and I'm convinced there are multiple paths to POIS symptoms based on there being multiple pathways to impaired fatty acid synthesis and also "localised pellagra". I don't even know how a doctor would diagnose it. I just got lucky and stuff made sense in my clearer-headed space after the SIBO treatment.

As Kima and Herman pointed out, infection does "rob" tryptophan. However, this forum ran for years without people insulting and abusing each other daily. Please stop being horrible to each other.

I wish you all good luck and I don't think I have much more to contribute.

[nomore2013]

i also had a amino acids test done by great plains laboratory, and all of them were low or very low.

correction!

i had a amino acid urine test by great plains laboratory, and all the amino acids were low or very low.

but

i also had a amino acid plasma test done by metametrix, and everything was normal, except for glycine, serine, which were high. i think this indicates a problem with methylation and detoxification. and also glutamine was high, which has something to do with muscle loss and/or subclinical ammonia toxicty. the recommendation by the lab was alpha ketoglutaric acid, a form of glutamine, which helps detoxify ammonia and convert b6 into its active form p5p, which is used for amino acid metabolism. where does ammonia come from, i think from SIBO.

i was told not to supplement with alpha ketoglutaric acid by my naturopath, because it will increase the glutamine levels even more and lead to increase in the excitotoxin glutamate.

is that true? i dont know. i dont know what to do, or how it all fits together. i just wanted to say there is a difference in amino acids urine test and blood plasma test, and i dont know which one is better, which one is good and which one isnt. or if they show different things, and you just have to know how to interpret them. i was told the blood test is good, and it is consistent with other labs i did as well. i am going to stick with the blood test for now.

[Kima]

On this site, three people were cured, it's Nathan, Gurov, and one participant (tonsils removed and Pois recovered.) This is all infections in the body.

[Dean93]

Hey guys

I haven't been here in a while. Does anyone mind updating me?

[meteo74]

There is Missing link..
Some people got cured and when you say how, then the answer is by so and so then this treatment is just for this man and well not success for the other because our bodies are different... , our pois is the same and the cause of pois is the same .. so there is missing link..

[acronym]

Hi,

We finally reached the success with Gaurav's POIS and now he completely cures from POIS. But cause for his POIS is completely different from mine where for me it is due to accumulation of toxins in the body and the same was cleared through panchakarma process.

Whereas as updated earlier, we (my dr.kumar's suggestion) tried panchakarma treatment on Gaurav, but found 40% result and his POIS bounce back after two months. Again in coordination with Gaurav's physician, Dr.Kumar suspected nervous system imbalance is the reason for the Gaurav's POIS. For this he suggested various medicines and nothing worked on him.  Finally, Gaurav found Wisdom Tooth in both sides of his lower jaw and apparently there was no physical pain. In X-ray it is found that the Wisdom tooth gone depth and due to this there was a imbalance in nervous system function of Gaurav.  One month back, he removed his Wisdom Tooth by extraction (small dental surgery) and now he is out of POIS.   This is the result of Gaurav's status.   

Hi Natham. I realize English is not your primary language, but can you do us (well me anyway) a favor and explain a little better, what you meant with the bolded comment above. For me, I would be pretty reluctant of having a tooth pulled on the basis of 'possible nervous system imbalance'. I would want to have a definite negative medical condition to go ahead with that. Its a great outcome for Gaurav for sure, but its a bit of an unscientific explanation for his pois for many of us here I feel.
Was it an impacted wisdom teeth (the tooth is below the gum line)? 

[hurray]

Hello, I haven't posted here for a while.

Just went over to poiscenter.com, the forum is dead. What happened? Did everyone get better?

Any news on how the POIS research is going with the $30,000 NORD grant? Or any news on when there will be some more news?

Fenugreek is still doing a good job for me, I'm pleased to say. I haven't had much luck with Niacin. A good meal and Fenugreek before O is the best thing I have managed to come up with, after trying A LOT of other different pills etc.

[kurtosis]

Fenugreek is still doing a good job for me, I'm pleased to say.

That's a good point Hurray. For the moment, we must be content with such small successes.

Hurray, B_Jim.
I'd like to make a small suggestion regarding Fenugreek. If it's working for you I'd like to understand why.
Given the role of lysine in fighting some viruses (herpes via arginine competition) and as a fundamental building block of collagen in the body, I'd like to suggest you take a lysine/proline combination instead-of the fenugreek for about a week or 2 and see what happens. Then try the lysine/proline combination with a half dose of fenugreek.

I've often wondered whether people with illnesses such as CFS who claim improvement through lysine supplementation are actually fighting an underlying but chronic herpes viral infection.

As I mentioned in my last post, it may be practically difficult to distinguish between an autoimmune disease and a localised form of pellagra. Inadequate lysine consumption or over-utilisation may also produce pellagra symptoms of "brain fog", poor motor control, skin problems etc. so what I'm interested to learn is whether lysine is the active ingredient in the fenugreek that improves things for you.

Good luck!

[Kima]

hello
demografx
 There had to be November 1 conference in Dubai. Internet silent.
When will the research?

thank you

[mellivora]

Kima, the last I heard (from a post in poiscenter) is that a researcher will be named by NORD at the end of November or early December.  I don't know when the named researcher will commence work on POIS.

On a general note (and I am nothing more than one of the many POIS sufferers on the forum with no more say in what goes on here than anyone else), I wanted to add my voice to some recent calls for a bit of peace:

This forum used to be a very positive place. There are still many hints of that. When it comes to digesting and responding to posts here, sometimes its useful to remember that there are a lot of people here not writing posts in their first language. Sometimes its worth remembering people here often post while they are in a POIS state. And its always worth remembering that behind every name here is a human being and almost certainly one who has experienced the ruin that POIS can bring. We have a wide range of ages  and experiences within the forum. If you disagree with a comment on the forum or believe a different theory, its ok to say so but please don't be abusive. It doesn't help anyone and invariably reflects badly on the abuser.

I agree that there are inconsistencies in some people's posts. Some people here have made posts saying one thing and later made a post seemingly saying completely the opposite. Its ok to politely ask for an explanation and its ok to ignore the posts of people you don't agree with. However, its not good for the forum (and therefore everyone else who relies on it) to be rude and abusive and to post personal non-constructive criticisms of people. As has been mentioned by others, its also not helpful to prematurely declare cures for POIS or to present  as facts things that  are merely hunches or your own theories. There are people here who can be in desperate and vulnerable states of mind and  may be influenced in many ways by what you post. So please be mindful of this.

Please take a moment to think about where you would be without this forum and without poiscenter. Other POIS sufferers are the only people who truly understand what having POIS means and whether you visit here regularly or just occasionally, I'm certain that the world would be a far more lonely place without knowing that you can access the  support, contact and ideas of fellow sufferers when you want to. For my first five years of POIS there were only baffled and often unhelpful doctors. There was no forum and there wasn't even a name for our condition. I know I wouldn't want to return to that isolation. I don't post all the time but you people that make up this site are very important to me and I'm grateful you're here.


Personally, I'm finding the theories of Herman and Kurtosis the most interesting I've read for my case in a long time, perhaps the most interesting to me ever, and I'm very grateful for that hope. As some of you will know, my POIS began after I had radio-iodine treatment for an overactive thyroid which, following the treatment, made me, in effect, underactive (because most of the thyroid gland was killed off). The theories involving mineral imbalances and  tryptophan metabolic pathways are interesting as  they are probably the easiest I've come across to relate to thyroid issues.. I've been pretty conservative compared to most people here when it comes to trying different remedies for POIS and I tend to only try things when theories based on research papers i can read make sense to me. I'll be sure to post any progress I make following these theories.

In the meantime… Life's too short for personal attacks and slander…please try to post positively, constructively or when you really need help. Think about how your responses sound to others before you post them and post with respect…Its easier to paddle the boat when we're not hitting each other over the head with the oars.

[John21 (OP)]

I haven't contributed for a while as I have been completely O-free for a long time. But last night I had an NE but I am happy to report that I have no POIS effects.

Recent thinking and significant changes to my diet:

1. A couple of months ago I eliminated nightshade foods from my diet. Primarily I stopped eating potatoes and tomatoes. I am doing so in considering if POIS might be caused by cholinesterase inhibiting foods.

2. I have recently started eating small amounts of fava beans nightly, which might be boosting my dopamine levels by supplying the precurser L-Dopa. I have definitely felt better in general while consuming the fava beans, and my sleep has improved slightly. My double vision has not improved.

One idea how these changes might have resulted in a POIS-free orgasm is that either one might correcting a poor acetacholine/dopamine ratio, potentially caused by cholinesterase inhibition of solanine. Or, it might simply be a result of having a chronic low dopamine level. Note that fenugreek also contains precursers to dopamine, and it has helped some with POIS. If it were that simple then my POIS could be due to low dopamine. If so when when I orgasm and dopamine levels are driven down lower, this might cause havoc when running on a low tank of dopamine. Or it might be that I am very sensitive to the solanine in nightshades, affecting my acetylcholine system and throwing off the Ach/DA ratio. This also makes sense as my double vision is most likely caused by a problem with my acetylcholine system.

I welcome any thoughts on these ideas.