Iwillbeatthis treatment and case diary

[Iwillbeatthis]

The week before my POIS started I had a fever from going out and drinking too many nights in a row, The fever I did have bad back pain and leg pain and headache.

While I was recovering from the fever I had a fleshlight, the only problem was is the last time I had used it I forgot to wash it properly and went on holiday for a few weeks. When I opened it after a few weeks it stunk and there was yellow mould/fungus floating in the bottom, I was disgusted and washed it with hot water in the shower but I never used any disinfectant/alcohol like you're supposed to do, I didn't use soap either as apparently that damages it. I then stupidly used it after washing it (this was while I was nearly recovered from the fever) then 2 days later I had suddenly developed POIS.

The POIS symptoms the first few months were extremely severe: severe lower back/upper back pain, leg pain/leg weakness, headaches, sore throats, chest pain, low grade fever, abdominal pain, nerve pain, like my whole body was shutting down. I had nothing going on in my personal life which would have caused any of this, in fact it was a good time in my life when the POIS started

This got a a lot better after a few months but I was still left with brain symptoms, some back stiffness, bladder pain, some nerve pain in feet.

I told the Mast cell research Professor this story and he said it's definitely had something to do with my POIS starting, I told normal drs this embarrassing story and they had nothing to say and didn't think it was linked.

I did post about this ages ago but no one had anything to say, I haven't seen someone on here with such a clear possible cause as this and the timing of the event and POIS starting was too close for it not to be related.

Unfortunately for years I tried to tell mainstream drs to check for candida/mold or give me antifungals but they don't get taught about this topic in medical school and apparently there are no reliable tests for candida Muon said.

[Iwillbeatthis]

One more thing happened one year before my POIS started: I took the drug ketamine at a rave, in the past I had tried it with no issues at all(maybe had taken around 7 times before). This time it caused some permanent damage to my bladder I found that ever since then I would get pain in the bladder region if I smoked weed or drank alcohol. Smoking weed would be worse and it caused bladder pain lower back pain and leg pain, it also would give me a cold (runny nose the next day) I would also find it hard to urinate if I smoked weed. One time I smoked weed and I could barely urinate for three days.

I guess there were probably some heavy metals/bad stuff in the ketamine which caused this damage as I got it from a unreliable source, or it may have just been too strong for me.

Cystoscopy showed nothing: but I do remember seeing a red inflamed patch on the camera screen which looked the same as IC ulcers. I now know that if it was a cystoscopy under general anesthesia then they would be able fill the bladder with liquid and check for hemorrhages, and also some doctors are taking biopsies of the bladder vessels to check for mast cells.

6 months after this ketamine thing happened I had normal vaginal penetrative  sex with a girl and after the sex I had diarrhea with lots of blood in my stools??!!

[Iwillbeatthis]

One more thing my urine was also very cloudy when POIS started, in urine samples you could see tons of mucus. Testicles were also red and itchy.
Bacterial infection urine tests came back negative but they never checked for candida like I asked for.

[Muon]

In addition to the symptoms i sometimes have what you call 'the chalky stuff' in my urine, but ive only been noticing that the last few years. Two years ago it was so bad that for months it was in every pee (i call it 'dust clouds') and had it tested by my doctor, but they said it wasnt anything to worry about (didnt tell me what it was).
Last year i had 2 UTI's for the first time in my life. Another possible POIS related thing is i've been having tremendous sharp pains in my prostate in the middle of the night, but only a couple of times a year. The pain lasts about half an hour, it started when i was about 30.  I have not experienced these pains for 2 years now however.

Today i read something interesting on the NSF:
"Sexual dysfunction: Postorgasmic illness syndrome, Suzanne J. Farley
Abstract: New evidence supports the hypothesis that postorgasmic illness syndrome (POIS) in men involves a hyper-reactive immune response of the mucosal epithelium that lines the urinary tract to seminal fluid."

In 2010 my feces was tested on several things among which beta-defensin 2.
- beta-defensin 2: 139,20 ++ (ref < 23, so 6 times the maximum value)
I understand that BD2 is an anti microbial peptide made in mucosal epithelium cells and a high level indicates a hyper-reactive IS (the IS part you are born with). I wonder though if BD2 from the mucosa near the urinary tract would show up in a fecal test.
Anyway, i wouldn't be surprised if the white stuff comes the reaction in this mucosa, but i don't believe it's semen.

[berlin1984]

The week before my POIS started I had a fever from going out and drinking too many nights in a row, The fever I did have bad back pain and leg pain and headache.
...

Wow, interesting story. I hope you manage to treat this somehow even without doctors, just with supplements or non-prescription stuff for bladder issues (My go to is Angocin).

A diagnosis would still be good though, maybe you can pay privately for it somewhere.

I also took K a few times but that was already after POIS started I think...
I don't have your bladder related physical symptoms except itchy groin area..

[Hopeoneday]

Hi, Berlin, off topic - What job can a man with POIS and CFS do in Germany? From your point of view?
Do doctors in Germany accept the treatment of CFS syndrome
patients?

[Hopeoneday]

https://poiscenter.com/forums/index.php?topic=915.msg8818#msg8818
White chalky urine...  some reported recovery after get rid of chalky staff
from body in urine...

White stuff https://poiscenter.com/forums/index.php?topic=108.0

https://poiscenter.com/forums/index.php?topic=104.msg800#msg800
Chalky sutff??? Is this related to calcium???


https://poiscenter.com/forums/index.php?topic=965.msg8767#msg8767
Intresting post from member -UnderstandingPois...
Chalky stuff, circulation etc

NSD chalky stuff out.
https://poiscenter.com/forums/index.php?topic=54.msg880#msg880

[berlin1984]

Hi, Berlin, off topic - What job can a man with POIS and CFS do in Germany? From your point of view?
Do doctors in Germany accept the treatment of CFS syndrome
patients?

Thanks Hopeoneday, you finally nudged me into creating a thread about myself...
(Yes Muon you asked about this for everybody  )

https://poiscenter.com/forums/index.php?topic=3760.0

[Iwillbeatthis]

Had 2 Os yesterday and my symptoms today have been much better than they have been in the last two months.

Heres what I've been taking/doing nicotinamide riboside, matcha tea, nicotinamide extended release, NAC, epsom salt baths, byron white a fng, lymphatic drainage massage from groin lymph nodes (perrin technique), psilocybin micro dose, eating less/smaller meals, drinking alkaline water, epa oil, mediation with grounding pillow and band.

I've only been taking the nicotinamide riboside for a week but my skin looks so much better and younger on my face.

A month ago I had a really bad O where I didn't use porn so I had to use coconut oil to get hard and do it, well this resulted a really unsatisfactory O and it felt like my prostate didn't empty properly which then caused really bad POIS.

The Os I had yesterday were much stronger and satisfactory because I used porn and I think this also contributed a lot to having a better reaction. So porn is good for me lol....

[Iwillbeatthis]

This made me remember my OAT test results that said I had  high 2-Hydroxyisovaleric acid which suggested mild maple syrup urine disease. This means you’re unable to break down branched chain amino acids.

Lol I looked at the sample report for the same OAT test and the sample also had  high 2-Hydroxyisovaleric acid, so I guess its bs and I don't have any mild MSUD.

Pretty sure it's Phenylalanine in meat causing me issues.

[Iwillbeatthis]

I noticed these last two weeks my mum eats a lot of high phenol foods so I'm pretty sure its these causing the hyperactivity, irritability, stimming, anxiety in her, some days she's wired like that and some days she isn't. Histamine could be affecting her to possibly.

She took the astrazeneca vaccine and seems fine from it luckily. I also found out my dad gave her Co-codamol once before and it made her throw up and very sick.

[Iwillbeatthis]

A friend told me this very useful tip recently; Amazon refund you no questions asked if you want to return something so this can be very helpful if you buy a supplement that you don't react well to or doesn't work.

[Going less Crazy]

A friend told me this very useful tip recently; Amazon refund you no questions asked if you want to return something so this can be very helpful if you buy a supplement that you don't react well to or doesn't work.

Even if you open the supplement and eat a few pills??

[Iwillbeatthis]

A friend told me this very useful tip recently; Amazon refund you no questions asked if you want to return something so this can be very helpful if you buy a supplement that you don't react well to or doesn't work.

Even if you open the supplement and eat a few pills??

Yeah I sent some back that were half empty and still got refunds.

[Iwillbeatthis]

Luteolin is the least phenolic compound of the flavonoids. It's almost bedtime for me over here and I'm alert as hell, cognitive speaking.

Pure Lut isn't sold by any UK/Eu suppliers which is pretty annoying and the cost/shipping would be a nuisance if I bought from the algonot website.

Not sure if I should try the low phenol neuroprotek or not which is available in the UK. The amount of quercetin in it is small compared to the others but I've been told to avoid quercetin.

[Muon]

Cost is kinda risky for you. I took a risk and ordered 9 bottles with discount from Algonot. Going in for the long haul. EU supplier prices for NL are ridiculous.

[Muon]

Current standing of plant derived flavonoids as an antidepressant.

[Iwillbeatthis]

I tried cutting out meat/fish/eggs again and the difference in my functioning is crazy, I no longer become addicted to my phone, social media and this forum, in fact I don't even want to go on any of them anymore when before I would be checking obsessively. When eating meat my eye contact is not natural with people instead its very shifty, eyes darting around, or staring too long aimlessly like I'm not conscious or don't know how to make proper eye contact - (aspergers symptoms). I can also speak way more freely and expressive without meat and music sounds much better again.

Slow release nicotinamide with NAC does stop the neurotransmitter imbalance caused by meat for me but I still haven't got it working perfect yet and need to find the right dosage. I've ordered a slow release NAC which might help.

If you want to see if meat is affecting you badly just try eating some brown rice, quinoa, or gluten free pasta with some vegetables and see if you wake up better in the morning but I found you do need to eat something rather than eating nothing to see the difference.

These methyl cycle experts like heartfixer.com all recommend vegan diets as meat contains a lot of problematic things for people with neurotransmitter or methyl cycle issues.

If you have the homozygous MAO-A mutations like I do then cutting out meat/fish will help you especially chicken as it's high serotonin/tryptophan

Extra Virgin olive oil makes me wake up feeling inflamed in the morning if I have it the night before, and other phenols are also a problem but I think phenols aren't as problematic as meat is for me.

Its annoying as if I want to feel normal then I need to cut out meat, fodmaps, phenols, histamine, high gi carbs and that basically leaves no food left I'm seriously considering trying the amoxicillin soon as my gut bacteria are clearly problematic. Prebiotics/probiotics didn't fix anything.

I tried an enema yesterday with a probiotic, electrolytes and oregano oil. I still have liquid stools today from it, it didn't make me feel any better yesterday but at least it wasn't as bad as the coffee enemas which made me feel like shit when I tried them a year ago.

I've been trying lots of new supplements phosphatidylserine, ubiquinol, liquorice root extract, thorne electrolytes, zen gaba with l theanine, slippery elm and I haven't seen any good effects from them yet apart from the electrolytes. I might need to try individually so I can see which ones actually are good for me.

I got them all from Iherb which is much cheaper than EU websites and they have much better and more reliable brands like Now Foods and Life extension. They also offer a 25% off your first order, the Now Foods supplements are like half the price of the usual Eu prices on Iherb.

I going to stop buying stuff off Amazon as much as I can, most of the supplement brands on there don't contain the same amounts as they've advertised.

[Iwillbeatthis]

The pure epa oil from Mind1st has pretty much fixed my dysautonomia I no longer have blood pooling in my head or feet, no issues with heart rate, and my veins look much healthier very thin and hardly visible instead of being thick. Symptoms after exercise seem much improved.

I still have problems with excess neurotransmitters however.

So yes I still technically have some autonomic nervous system issues but the inflammation and blood pooling part have gone.

[Iwillbeatthis]

Ok here's what I'm starting to think: I have high peripheral dopamine (bad) but little dopamine in the brain:
My gene mutations and symptoms indicate this : unfocused, add, low motivation, social anxiety, dilated pupils.

My GAD gene mutations also indicate I have high glutamate and low gaba so I am going to try Picamilon for this, its gaba that goes straight to the brain (N-nicotinoyl-GABA) a combination of gaba and niacin. Regular Gaba supplements are mostly useless.

Also using NAC Susatin by jarrow which has a much longer half life than regular NAC 8 hours compared to 1.5 hours to lower excess glutamate.

There's probably also some dysfunction going on with DBH enzyme (indicated by my OAT test results - high HVA/VMA ratio) which converts dopamine to noradrenaline, pathogens and toxins can inhibit this enzyme.

I'm now Trialling out white willow bark (safer natural asprin alternative) as a COX2 inhibitor but it also raises dopamine and noradrenaline, with coffee, EGCG (AAAD inhibitor), Vitamin C extended release (boosts DBH activity), agmatine sulfate.

Gonna trial yohimbine (alpha-2 adrenergic antagonist) also..