Hello everyone! I'm fascinated with topics that Leo brings up in his videos and appreciate that he shares his thoughts with us. I haven't read the majority of the posts here, but I'm sure it's quite an extraordinary community here. This post will be a bit extraordinary even for you, I suppose. Please, be openminded, as always.
Disclaimer: I'm not a native speaker, so some grammar mistakes may follow.
So, to put it shortly: I have had lots of strange physical/mental symptoms and I have a STRONG hypothesis why.
Long story short, after water fasting for 12 days straight I entered the worst 3-4 years period of my life - I started to have intense depersonalisation/dereaslisation, I became intolerable to any mental, physical stimuli (sounds, tobacco, coffee, walking, running etc), my mind was racing with absolutely random and rubbish thoughts 24/7 (not particularly negative, just annoyning and constant) , it felt like I was constantly on the verge of having a seizure, like my brain was about to burst from the overactivity. I've started to have severe problems with my digestion (completely undigested food, strange stool colors etc), I've lost a lot of weight (20+ pounds) and was unable to gain it back, my pupils started to pulsate constantly without any light changes.
Then I've started to experience SEVERE brain fog/confusion beyond anything you can imagine - it literally felt like my blood was full of dirt/garbage, I sometimes couldn't figure out what to do or where I was (I'm 20+): it was triggered by mental/physical stimuli and also almost by any food group besides lean meat and fruits. Subfebrile temperature, acute suicidal depression after eating something wrong (especially fungi, eggs and dairy), masturbating. Bilirubin raising after not eating for 3-4 hours, or triggered by some foods (I literally became yellowish in a matter of 10 minutes after eating something). I literally became non-functional.
List goes on and on and on - pure, unbelievable rabbit holish torture nobody have prepared me for. No joke, if I wasn't previously healthy, happy teen - I would just end it, I suppose anybody would, sometimes it was just UNBEARABLE.
Quite a call to action for a Hero's journey.
As somebody who previously didn't have ANY problems at all, after going to multiple psychiatrists and trying out most of the psych meds with 20% improvement max (I did right after all this started, just to end the constant torture ASAP) I've started to do my reserach almost 24/7. Pubmed, forums, reddit, experimenting - I've tried almost EVERYTHING you can imagine: nootropics, psych meds, antiinflammatories, multiple fecal microbiota transplants (brain fog intensified x1000), meditation, spiritual practices, psychedelics like shrooms, DMT from multiple quality sources (after FMT it just doesn't affect me at all), even some very experimental drugs and injections, peptides etc. After trying all of this I've managed to pull my quality of life from the bottom to somewhat acceptable 40% of my ideal state of health - multiple drugs + diet which consists of only lean meat and limited groups of food. I'm grateful to have some clarity of mind even if it's not ideal and I still have huge issues. I recently even managed to have a quite decent job - yay!!
And here we go for the juiciest part of my story. On my way to figuring out the puzzle and experimenting with everything I took some antiparasitic/antiprotozoal drug which cause some very powerful Herxheimer reaction + (sorry for TMI) some green really deadly/rotten smelling mucus came out of me. When it was inside my bowels I was hit by the most profound confusion and horror I can't even imagined before. Putting all the unneccesary details down - I found out it look exactly like a "rope worm" - hypothtically an organism which was firstly described by Alex Volinsky as a worm/helminth here - https://arxiv.org/ftp/arxiv/papers/1301/1301.0953.pdf. By observing my own situation, I came to the conclusion that it's obviously not a worm/helminth and it's just the bad hypothesis from one person. But EVERYTHING in my direct experience told me it's not just mucus - distinct structure, physical feelings in my bowels and all over the body connected with this "mucus" coming out, my severe reaction to certain type of foods, relative lymphocytosis in my blood work (most likely body fighting an infection), my reaction (including Herxheimer) to every antiprotozoal/antiparasitic medication, subfebrile temperature, my nose discharge containig THE EXACT SAME ropey mucus structure, anecdotes from thousands of people with photos, the smell, structure, and finally, video from my colonoscopy (not for the squeamish):
If you type "rope worm" into google you'll be met with all sorts of misleading articles on how it's a worm or just mucus, or even fecal matter (from "reputable" medical journal). Just nothing about facts, microbiology research etc. I know, I wouldn't even consider this hypothetically infection to be real if not the story that happened to me, I know it seems so strange.
But I would bet my life on that this thing is actually somehow alive and is an infection.
My wildest guess would be that it's a cross of myxomycetes (eukaryotic organism that doesn't belong to fungi kingdom) and something else. My another wildest guess is that it was made in the lab - too bizzare to be something natural and not be detected by microbiologists. If it's indeed true, it can gain its host DNA as a immune defense method like many fungi do. My hypothesis is that quite a few people are infected with this but I was unlucky/lucky enough to have constant immune reaction to it (lymphocytosis and I react to any immune boosting supplements and vitamins with severe inflammatory reaction)
I can ramble a lot here, so I'll just stop here. If you want some more details, just ask me questions in this thread, I'll try my best to answer them.
I just need:
Advice or some help.
What should I do next for this thing to be seriously researched? I sent lots of emails to my local research centres trying my best to describe my hypothesis as straight as I could while trying to seem sane in their eyes - no response. I don't want other people to suffer like me. There is a gofundme campaign to raise funds to sequence its full genome (https://www.gofundme.com/f/je6crx-rope-worms-full-genome-sequencing) but I suppose it won't be completed in the next 10 years even.
Any help or contacts you can help me with? How should I present this thing to others and approach the whole thing to seem like I am a sane person?
I want this problem to be solved during my lifetime. Nobody on the Internet seems to care as most haven't had it as bad as me. Mostly just intolerance to some food. I need a look from another perspective and clear mind.
Any help will be appreciated.
I wish everyone pure and clear mind!