Not impressed by POIS research

[Muon]

And never was.

I also wonder if researchers write reviews for the sole reason to boost their careers, to keep themselves relevant.

I think the professional medical community is like a bubble of people that are out of touch with reality. Critical thinking made place for boot licking.

This thread will probably be disliked by most readers. I don't care, so be it.

[less_fogged]

And never was.

I also wonder if researchers write reviews for the sole reason to boost their careers, to keep themselves relevant.

I think the professional medical community is like a bubble of people that are out of touch with reality. Critical thinking made place for boot licking.

This thread will probably be disliked by most readers. I don't care, so be it.

Hi Muon,

I can imagine how you feel. You've posted so much on the forums that all your posts combined together is probably worth as much or more than all the scientific POIS articles combined ever written! Maybe you should now work with the researches to show them how things get done.

[Quantum]

And never was.

I also wonder if researchers write reviews for the sole reason to boost their careers, to keep themselves relevant.

I think the professional medical community is like a bubble of people that are out of touch with reality. Critical thinking made place for boot licking.

This thread will probably be disliked by most readers. I don't care, so be it.

Hi Muon,

I can imagine how you feel. You've posted so much on the forums that all your posts combined together is probably worth as much or more than all the scientific POIS articles combined ever written! Maybe you should now work with the researches to show them how things get done.

Medical research in general is very slow, and it is even slower for rare diseases and new diseases.  I understand your frustration, but you could compare to another disease and see that there is nothing exceptional about how slow things go for POIS research.

For example, look at CFS/ME.  Chronic Fatigue Syndrome/ME affects over 20 millions people around the world.  It has been acknowledged as a disease for far longer than POIS.  ME/CFS gradually gained more recognition as a legitimate and disabling medical condition through the 1980s and 1990s, with the CDC case definition in 1988 and WHO classification in 1992 being important milestones. Is there a test  yet for CFS diagnosis ? No ! There is no specific blood test, brain scan, or other laboratory test that can definitively diagnose ME/CFS. The diagnosis is based primarily on the pattern of symptoms reported by the patient and ruling out other potential causes.  Is There a cure or a definitive treatment for CFS/Me ?  No !  Just non-specific treatments to lower the pain, using pregabalin or antidepressant, and so on.  And experimental treatments, but nothing defiitive for now.

Now, why would you think that things should be different for our rare syndrome, that has been first mentioned and given a name by Dr. Waldinger in 2002, that is, over 20 years later than CFS ? Why would we be on the fast lane, since we are a very rare syndrome, compared to a disease affecting 20 millions people ?

Having realistic expectations would help you both feel less frustrated.

[Warrior]

I think the reality is that for those with POIS you are better off taking it all into your own hands to fix. By this I mean finding a specialist that is actually passionate about what they do and have experience in working with chronic diseases similar to POIS. Working with them and getting as much testing done as possible.

You will probably be dead by the time medical research finds a reliable cure. Traditional doctors may offer some pharmaceutical drugs that can relieve symptoms but ultimately their solutions are weak.

I personally believe functional medicine is the way to go if you have the money. Traditional doctors appear to be very lackluster for the weird chronic disease types like POIS. Yes there exists some bad functional medicine charlatans, as is also the case with traditional doctors. But there also exists some very knowledgable functional medicine specialists who have achieved great results with many patients whom have all sorts of weird chronic diseases which more than likely share similar pathology to POIS.

I think the answers to each POIS case rely somewhere in these domains: gut microbiome, infections, viruses, pathogens, toxicity - heavy metals, mould exposure, nutrient deficiencies, hormones, etc. All of these can be comprehensively examined by a good functional medicine specialist. The unfortunate catch is that you need money.

Ideally you would work with an actual doctor (MD) who also has extensive training in functional medicine. Best of both worlds.

[Sisyphus]

@Muon
Do you have some ideas for how you think POIS research could be improved?

[less_fogged]

I think most medics have good intentions and are kind enough to help but you also need to be lucky to find the best ones that are always prepared to go a step further to find you the right contacts. It's often who you bump into that's prepared to search further for you and what they capable of doing! This website alone is a good meeting point especially for those who feel lost and see what's all been discovered etc. Thanks to those that created and supported this site. I'm glad that this website exists.
But concerning the global medical system, in the past years there's also been corruption and people with bad intentions when it comes to money! I discovered that ME/CFS is an example of this and insurance companies are believed to be behind this. Ever heard of a UK psychiatrist called Simon Wessely. According to some online articles, years back this man was friends with high ranking politicians in the UK and also collaborated with insurance companies to get research done on ME patients with research being done in a misleading manner with results that research papers would look like as if everything is psychological. The insurance companies were financing the researching for the illness. Get the idea....look it up for yourselves online. What's even worse these guys came up with a physical exercising treatment plan that would make the patients even worse off. The covid virus has also played a huge role in the discovery of all this because people with the long covid suffer in the same way as someone with ME/CFS. It's believed that if they had rather done the research correctly since the early years we would have known a lot more on advance to know how to deal with the covid epidemic.
Insurance companies prefer we don't find a diagnosis as they'd have to pay us out once an illness prevents us from working. CRAZY world we live in.

When it comes to diagnosis for ME/CFS there's no one test that fits for all, it's indeed a lot more complicated. For myself over the years I've been through many blood tests, scans etc. Initially because I was complaining about POIS symptoms, but in the list below you can see the different methods used specifically for ME and so in my case it was eventually diagnosed after a SPECT scan (objective evidence of abnormal perfusion in the brain), you will see it mentioned on page 17 in this article.
https://drive.google.com/file/d/1Yu79EYxQIwNVER5tErp7LH7KY8pI8S_e/view

Also have a look at this documentary what it took the ME/CFS community to have them taken seriously
https://www.youtube.com/watch?v=XOpyLTyVxco

[ghayor]

Yeah cause all they care about is money. You are right on the money. They don't care about POIS and neither should they, it doesn't affect them. It is solely about their Academic life and money. Any interest shown in POIS is because of this.

Perhaps some breakthrough might be made 100 years from now but by then you and I will be dead. You have to do your own research and do everything in your power to treat yourself because nobody else cares.

My primary concern is wet dreams and that is what my research revolves around, I conduct experiments on my own body to try to figure out what works and what doesn't.

I would suggest nutrient limitation. I am scoffed at but it has reduced my symptoms by 90% however I have a very extreme form consisting of just sugar and white bread. I still get nocturnal emissions but the POIS symptoms are significantly reduced.

You can try it out if you like.

[Quantum]

I think the reality is that for those with POIS you are better off taking it all into your own hands to fix. By this I mean finding a specialist that is actually passionate about what they do and have experience in working with chronic diseases similar to POIS. Working with them and getting as much testing done as possible.

You will probably be dead by the time medical research finds a reliable cure. Traditional doctors may offer some pharmaceutical drugs that can relieve symptoms but ultimately their solutions are weak.

I personally believe functional medicine is the way to go if you have the money. Traditional doctors appear to be very lackluster for the weird chronic disease types like POIS. Yes there exists some bad functional medicine charlatans, as is also the case with traditional doctors. But there also exists some very knowledgable functional medicine specialists who have achieved great results with many patients whom have all sorts of weird chronic diseases which more than likely share similar pathology to POIS.

I think the answers to each POIS case rely somewhere in these domains: gut microbiome, infections, viruses, pathogens, toxicity - heavy metals, mould exposure, nutrient deficiencies, hormones, etc. All of these can be comprehensively examined by a good functional medicine specialist. The unfortunate catch is that you need money.

Ideally you would work with an actual doctor (MD) who also has extensive training in functional medicine. Best of both worlds.

Thanks for your interesting and well-thought-out point of view, Warrior !

[Quantum]

When it comes to diagnosis for ME/CFS there's no one test that fits for all, it's indeed a lot more complicated.

My feeling is that POIS is also a family of different syndromes instead of just one, and that it will also be very complicated.

And, about the fact that this world is too much about profit and lack kindness and compassion, I agree - humanity is not a very evolved civilization in its current state.

[Sisyphus]

The problem I have with medical research is that I don't understand 99% of it!
Partly due to pois, I've tried to educate myself. Hopefully I understand a little more than before.
I'm very interested in the forthcoming research project associated with this forum. I imagine that there are some high hopes for what might come out of it. Hopefully the research will reveal some interesting things.

Ideally you would work with an actual doctor (MD) who also has extensive training in functional medicine. Best of both worlds.

Hopefully one day that will be possible! In my experience, where I live, doctors and functional medicine practioners are divided.

[demografx]

…I'm very interested in the forthcoming research project associated with this forum. I imagine that there are some high hopes for what might come out of it. Hopefully the research will reveal some interesting things…

Sisyphus, thank you very much for your positive outlook! We have inve$ted/donated and worked very hard for many years to arrive at this very fortunate time in POIS history!

[Warrior]

Ideally you would work with an actual doctor (MD) who also has extensive training in functional medicine. Best of both worlds.

Hopefully one day that will be possible! In my experience, where I live, doctors and functional medicine practioners are divided.

The trick is to find one online and do remote consultations. There are plenty of them - you just need to find the right one.

Maybe I will create a list of them, though I would only really be going off their surface level qualifications. I think when choosing you also need to find one you genuinely resonate with.

For example, I saw Oscar Sierra from Sierra Collaborative Medicine through online consultation. He’s not a doctor but has extensive training in traditional and modern medicine practices. He also works predominantly with cancer and strange disease patients, many of whom who have had zero success working through the existing health care system.

I only did maybe 4 or 5 sessions because it’s expensive (for me- each session was about $215USD but I was discounted student at the time) and just found that I was making good progress by myself through lots of trial and error. But if I had the money I totally would have exhausted his expertise. We did (likely) rule out some potential root causes like autoimmunity, sibo, and histamine. I thought his approach was comprehensive, methodical, and patient. I can also tell he loves what he does so he’s actually passionate about working on the problems.

This reminds me of something someone told me via Reddit: Your doctor is only as good as the data you give him. No matter how intelligent they are, they can’t read your body without data I.e, blood work.

So when you do find a specialist, you aren’t just having to pay for the appointments. If you want to do it seriously, you are also going to have to fork out a lot of money on testing, supplements, herbs, medicinal protocols, specific dietary changes, etc.

[Sisyphus]

Warrrior, I dig your positive attitude. I think I'm more cautious than you are about functional medicine. I'm not against it but I'm wary. I agree about the huge potential. Maybe I just need to try a consultation one day (might need to rob a bank first!). It sounds like your consultations with Oscar Sienna were helpful for you.

[total]

My symptoms also decreased greatly when I started eating a protein-free diet. I eat pasta, bread, cabbage, etc. I decided to switch to a carbohydrate diet due to the constant presence of protein in my urine. But when I decided to eat meat cutlets, I had a severe allergy in the morning. I think pois is related to the kidneys. I am also severely deficient in vitamin D. And there is grade 1 osteoarthritis in the knees and feet. Do you have osteoarthritis or protein in your urine?

[ghayor]

Hi Total, I'm shifting from bread towards pasta as the store brought bread has far too much sodium (280 mg per 140 calories). The bread makes me pee too much. Frankly I think sodium and protein puts far too much pressure on the kidneys which is a filtration system.

I have shifted towards pasta and sugar as in this manner I can avoid the excess sodium. At the moment, I pee once per day, sometimes twice, I'm hoping by cutting my sodium intake further, I'll pee less.

Yes meat makes me severely ill, especially if meat is combined with dairy.

Yes on this severely restricted diet, I sometimes get pain in my left knee and in my two index fingers however this pain goes away if I eat eggs, however the eggs give me Nocturnal emissions so I avoid eggs.

I think my deficiency in cholesterol is giving me the joint pain. I advised my father to stop eating eggs and after two weeks or so, he started complaining about joint pain. It went away after he began eating eggs again.

I don't know how to test for protein in urine.

Even so, even pasta contains a lot of protein.

The ideal diet would be just sugar 2000 kcal of sugar per day and nothing else, however i find that it's impossible to do this for more than two days.

And yes a Vitamin D deficiency weakens my immune system and I start sneezing and get a runny nose however if I consume vitamin D supplements (they come in 400 iu tablets), bam wet dream. So I avoid wet dreams through my Vitamin D deficiency however it keeps me perpetually ill.

Also according to the USDA about 1570 calories of pasta has 5.1 mg of zinc
https://fdc.nal.usda.gov/fdc-app.html#/food-details/1101529/nutrients

And zinc gives very potent wet dreams. So even pasta is not safe.

Also copper blocks zinc absorption so perhaps use copper utensils (plates, pots, pans, etc).
In the old days, they would use bloodletting to balance the humours. There was a theory about humours and about how excess humours could cause illness

[total]

I bake my own bread in a bread machine, store-bought causes severe inflammation all over my body, but home-made bread causes less inflammation, but still exists. I would also exclude bread, but it fills you up well. I ate a lot of lard, but after some time it made me feel very weak and I constantly slept several times a day for a long time. I removed the fat and my vigor returned. I once took vitamin D, but it didn?t work for me, severe inflammation appeared, my joints began to hurt even more, there was a burning sensation in my eyes, immunoglobulin E immediately soared to 4000. Maybe because of the overload of the kidneys, because I wasn?t on a diet yet. I'll try vitamin D again one of these days. Pineapple helps me well against inflammation; if I have gastritis, it?s better not to eat it or other contraindications. To check whether there is protein in the urine, a simple test is taken, ?General Urine Analysis?. You can also use ?Daily Urine?. When I ate everything in a row, I was always tall. I removed all dairy, meat and fish dishes. The protein has disappeared and I don?t feel any allergies. I feel energetic and in a great mood. Only from homemade bread I feel inflammation as soon as I eat for an hour, then everything goes away. I also drink cranberry juice immediately after O. I try to wash everything out of there, it also seems to help. I did an MRI of the ureters, they found distal dilatation of the ureters (Megaureter), and kidney stones. Maybe they somehow affect POIS.

[total]

Mod edit
I have completely eliminated sugar for a long time, only in the process of making bread I add one teaspoon and one teaspoon of salt. After O., joints throughout the body begin to crack, maybe if you find the cause of osteoarthritis, then there will be an answer to my pois treatment, maybe vitamin D sags greatly after masturbation or calcium. It’s just that almost everyone has problems with joints and vitamin D.

[ghayor]

Hey Total, these symptoms, are they as a result of Masturbation or Nocturnal Emissions.

[Hopeoneday]

My symptoms also decreased greatly when I started eating a protein-free diet. I eat pasta, bread, cabbage, etc. I decided to switch to a carbohydrate diet due to the constant presence of protein in my urine. But when I decided to eat meat cutlets, I had a severe allergy in the morning. I think pois is related to the kidneys. I am also severely deficient in vitamin D. And there is grade 1 osteoarthritis in the knees and feet. Do you have osteoarthritis or protein in your urine?

Intresing, individuall diferences, ones are beter on keto or meat, ones on
karbs diet.

Meat allergy in yours case, leky gut?

One connection i can see is autoimmune(osteoarthritis).

Did you ever test yours immune panel, ANA test, CRP, etc?

[total]

I did skin tests, I did all the immune panels, I tested for opistrochiasis, trichenellosis, toxocorosis several times in different laboratories... I was tested using the Parasep method. Rheumatoid factor. Creatinine, insulin potassium sodium chlorine FSH Calcitonin Procalcitonin Homocysteine ​​LH Testosterone Aldosterone Actg Estradiol DEA-SO4 Parathyroid hormone (free total) Prolactin, Androstenedione, erythropoietin osteocalcin TSH T3 T4 Androflor PCR extended, smear from the urethra. MRI of the pelvis, MRI of the eyes, nose,abdominal cavity. CT scan of the head. The immune status is expanded. And many more other analyses.
Which tests are beyond the reference values ​​(Eosinophil cationic protein 30ng/ml (<24) was taken once; total protein in urine 0.23 g/l (0-0.14) was taken often; the analysis was always elevated until I went on a diet without protein; CRP 1.47 mg/l (0-1) tested frequently, often elevated. Vitamin 25 (OH) D 12 ng/ml (<10-severe deficiency) tested 2 times, first time 8 ng/ml; CMV IgG 187.6 U/ml (>6.0 - positive); anti-EBV IgG-VCA 598.0 (>20 positive); IgE (total) was tested many times, always elevated, when I feel well, the minimum was 1338 IU/. ml (<100) the maximum was 4704 IU/ml. It dropped significantly when I was on only cucumbers and tomatoes for 5 days. I couldn?t stand this diet anymore, then I immediately took a test. increased. Then only on milk the ige is also high. Extended immunological examination: Lymphocytes, abs. 4.14 thousand/μl (1.32-3.57) T-lymphocytes (CD3+) 2931 10^6/l (880-2400) T-helper cells (CD3+CD4+) 1577 10^6/l (540-1460) T-cytotox. (CD3+CD8+) 1308 10^6/l (210-1200) B-lymphocytes (CD19+) 865 10^6/l (100-480) B-lymphocytes (CD19+) 20.9% (5.0-19.0) T-EK ( CD3+CD16+CD56+)%, 0.9% (1.0-13.0) Act. B-lc.+ EKK (CD3-HLA DR+), 21.1% (7.0-21.0) Act. B-lc.+EKK (CD3-HLA DR+) 874 10^6/l (100-640) Act.B-lc.+EKK (CD3СD69+) 40% (15-34)

In general, wherever there is protein there is a problem. Now I eat three foods: white bread (it makes my joints feel inflamed and my body is hot, but there is no sand in my eyes or sneezing), sauerkraut (no problems), pasta. And it's been like this for 2 weeks. I added tablets that say contraindications: lactose intolerance; almost immediately sneezing, itching in the eyes, and watery eyes appeared.