10/07/2025
It is incredibly disappointing for me to now feel like I have no other option but to share what is going on...
My dreams and aspirations, after going through such a tumultuous time already, have been squashed because of newer tech capabilities and people who want me to fail...
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I appreciate you taking the time to read this.
My name is Doug, I am an intermediately skilled Software Engineer, also I create, mix and master music for my own projects and record label Domino FX.
I have a serious health condition which flares up my muscles and joints in my whole body, a yet-to-be formally diagnosed sulphur metabolism issue.
Symptoms Include;
- Lose circulation to different parts of my body
- Experience migraine-like headaches
- Vision Reduction (difficulties with focussing and direction change)
- Increased sensory sensitivities (Light/Sound/Claustrophobia)
- Varying levels of arthritis like symptoms
- Muscle Weakness
I have been investigating the cause of these issues which suddenly started occurring in 2015. I have not worked since October 2023, when for the second time I had to stop working due to the severity of symptoms.
I have not stopped trying to sort this out so that I can get back to achieving my dreams and becoming a self-sufficient human again.
After 10 years of seeing specialists, numerous diagnosis and getting different treatments done... I finally figured out only this year by myself that the issue is with processing Sulphites and Sulphates. I was diagnosed with a sulphur allergy from age 9, but apart from having to stay away from red-wine, chorizo and wheat-beer, weren't really many downsides to the allergy that I could recognise.
My other formal diagnosis in date-acquired order are;
- Asthma
- Audio Processing Disorder
- Anxiety
- ADHD
- TMJD
- Autism
- FND
In 2021 life was going great for me, apart from the headaches and sensory issues. I had an amazing partner, friends, a local electronic music event I was running with two of them, strong family connection and was employed full time. Although the symptoms again were getting out of hand and the pain was making me more and more depressed and volatile. My partner left me, she wanted kids ASAP and I wasn't sure at the time (mainly because I hadn't sorted out what was going wrong with me medically, I wanted to make sure I would be around and be able to support them). Unfortunately this was when I first decided I couldn't handle the symptoms anymore and tried to leave this world. I had already had a major hospitalisation to try and sort this out, and was fed up that nothing was working. As a result the friends I ran the event with felt they "no longer could be associated with me". I was outcast by the extended friend group over a period of time, moving back home to mum and dad's so that I could afford another hospitalisation was also not a good look.
The folks soon after went on a much needed extended holiday around the nation while I continued to work and look after the house while they were away. I still had one close friend left and he knew "just the girl for me", and said she was keen on me too, I felt like I was in the best position to be able to prepare for my upcoming hospital stay while still having people around me who care. Unfortunately this all came crashing down a year later,I lost both my partner and what felt like my last remaining close friend. Meanwhile, I had to stop working again due to a further decline in health. I did the hospital stay and was diagnosed with ASD and a "undiagnosed somatic symptom disorder" which was used to explain the symptoms. Basically the psychiatrist had no idea how to treat the pain and symptoms and said I should go see a neurologist because the psychiatric route wasn't working.
Did that! 3 rounds of botox, Occipital Nerve Block, Radio Frequency Neurotomies and a bloody TMJ Arthroscopy. All in efforts to try and fix/solve the deteriorating condition. The negatives of having these procedures done, the unspeakable events regarding the breakup, plus my employer paying an "in-house" psychiatrist to go against my entire health team (therefore losing my job), this made life not worth living in my mind. I was in excruciating pain everyday, sensory sensitivities, unable to keep my head up, I felt like I was a literal piece of toast that was for some reason conscious. All the while pressured and judged by those closest to me to just "get a job" and learn to deal with it. Imagine feeling like your whole body is broken, your neck feels snapped, everything is shouting at you and you can't see!
In the shortest most painless way to deliver this possible, I had 4 attempts last year, 3 of them pre-meditated. After the third I went back to the psychiatric ward because I was literally a danger to myself whilst experiencing so much pain. I was not given any increased pain-relief (I had to sign a waiver that no additional pain relief medications would be allocated) for 7 weeks, this was the amount of time I had to wait to see the pain-management specialist as my psychiatrist would not (sadistic prick) allow it! To make matters worse the pain-management specialist refused to prescribe any medications and said I should get a Radio Frequency Neurotomies procedure done. Well I got that done, 2.5k (thanks mum and dad 🥹❤️), when I woke up it was the most normal I've ever felt my whole life, I could move my head and my eyes could see in 3D around me, noise was turned down by around 15db, the only pain remained in my left TMJ, everything except for that felt fixed! Unfortunately that feeling only lasted 24hours...
So after the benefits of that procedure vanished 3-4 days after and a new diagnosis to try and fathom (FND), I took off to save a damsel in distress from her "psychotic" "ex" who was abusing her and their young kids.
I met her in the clinic and felt compelled to help her after seeing the facility try and kick her out because she lightly self harmed 4-days after her admitting psych radically stopped her meds (multiple medications including >300mg of a Bipolar grade SSRI). I breached protocol as a patient after she had been in the short term emergency department for 48 hours without any of her usual meds, destroying her non-remaining chemical brain sanity. I arrived just as she was being pulled into a private room to process her extrication from the hospital, she was told she can't stay here and that there are no beds at any other hospitals for her. There was nothing I could do, I had no money, and nowhere I could offer her to stay. I got back to my patient room before curfew (all the while suicidal myself), if anything the horrors she experienced let my emotional-brain dull the sensations I was experiencing a touch less, and I clung on to that for dear life.
By the way, I did have one medically beneficial addition from those hospital visits, Clonadine. It's an old-skool bloody pressure medication they usually only prescribe to neurodivergent kids is what I was told. For me, the benefits are amazing. I can for the first time in my life say how I feel in the way I want to say it! It also has majorly helped with the anxiety and sensory issues.
Unfortunately I was then scheduled for a TMJ Arthroscopy by the maxillofacial surgeon who discovered I had a hole in my left TMJ. The unfortunate part I later found out was because the surgeon had just put me on not one but two new pain medications which he completely didn't even bother to check contained sulfa (medications that contain sulphur). But also in hindsight, maybe this is what needed to happen so that I would recognise it.
Back to the damsel... I took off to the country to trial living and supporting/protecting her while she fought to raise her kids without feeling vulnerable from "the ex". It was November and surgery was booked for late January. If I stayed with my parents I would most likely not be here still. In a nutshell, it was what I needed to do to survive at the time, although it was a harrowing experience to say the least. I once again, put my faith and all the efforts I could muster to put someone else first, in the hope for a home environment where I felt nurtured and appreciated.
Long story short, the bond I had with the damsel felt real and alive. Unfortunately what I could offer was not enough, in my experience this is what happens when a man is not fully healed and seeks validation and acceptance from a partners parents. It also didn't help that the damsel was in fact quite capable at lying. I was quite upsetting after forming strong connections with her children over the school holiday period, begging my parents to let us all stay as the damsels parents were unhinged to not just me but the damsel as well. I discovered more heartbreaking lies during the time at my parents unfortunately my reaction after having her phone ripped out of my hands after I was told I could read it when I started to scroll up. I believed I was within my rights to demand that damsel and her kids should stay at her uncles only 20 minutes away. The next day I received not one but two threats from the damsels family on my life. So, yeah that's where attempt 4 comes in.
Sparing all unnecessary brutal detail, I ended up with what I thought was a cracked rib after falling down a hill into a wooden bollard (in fact I had a large amount of fluid in my left lung and amplified the previously discovered issues with my heart after another OD). I couldn't lay down for 6 weeks, barely slept, on medication I was allergic to. But again staying with my parents was not an option. So when the damsel said I could come live with her, I again put myself through agony and went back out west. This honestly felt like a win, I had a prospective place to heal again and got to be around the family I had made for that brief time...Then I got a direct phone call from her father, another threat.
This resulted in myself being extricated from the new home environment after just 5 days. I was told I couldn't stay there on a phone call from Damsel while laying in a hospital bed while getting an ECG. Mind boggling that I was that fearful for my life that I prematurely discharged myself and drove back to my parents house after spending an incredibly painful night in a crappy motel.
Parents place again, not somewhere to be. I applied desperately again for a new place to live which would be quiet. Although this confirmed you can't get a rental on your own with income protection insurance. So as you can probably guess things started to go downhill again quickly. But then out of nowhere, a what-seemed close friend of 15 years offered a place to heal. Surgery was only two weeks away.
Things seemed somewhat doable, the place was an absolute tip but I tried everything to make it work. I even had my cat-child with me, it was going to be a place to heal with a friend who promised to look out for me. I had the surgery to the left side of my face (it's worse now), what felt like broken ribs and a disgusting housemate "using", eating my food and leaving the house in a state not fit for me let alone my cat to reside. I was bed-ridden, unable to afford to get food delivered or even cook for myself, and I could only eat soup/liquid or pureed food. Then the storm hit. Ya know, that one on the east coast that the media made into a "show-stopper". Well truth be told, they were right to be concerned. I spent one night at home and that was enough for me. First time hearing absolute chaos to deafening quiet, that occurs with cyclones of that ferocity. I was incredibly lonely and was getting more and more depressed by the so-called "healing space". I went through my phone desperately searching for friends and came across a number of an old flame from my youth. Hat in hand, an destroyed soul within, she offered a safe haven to escape the storm.
Well blimey, didn't we just hit things off! No word of a lie, after just 2.5 months it felt as though we had been together for years. A neurospicy just like me, her smile infected me like it did many moons ago. We cared and nurtured each other, she wasn't like the rest. A reciprocating adoration for each other and commitment to each other's future. You guessed it though, her parents didn't give me a chance. How does any woman bring a neurodivergent man into the fold when he is trying to get back on his feet. That generation (I do kind of get it) does not understand mental health.
Although it turned sour, this was the safe space I desperately needed (I wish I was still there). I'd finally cottoned on that the meds I was taking had sulfa in it, and then I started asking ChatGPT about it. I presented my symptoms and quick as a flash it came up with the most accurate potential diagnosis I had seen in 10 years... Sulphur Oxidase Defficiency. Usually a condition so brutal that infants don't often survive. Although it also has the potential to present later in life with nearly all the symptoms I experience. Of course I did a thorough google check and yes it is a real thing. It's a mutated SUOX gene that stops the body from being able to handle even trace levels of sulphur because it can't transform the Sulphites we invest into Sulphates, then flush them from the body.
Well you can imagine, I made it my absolute mission to try and work out if this was my silver bullet. And you know what folks it's really looking that way. I now avoid food with Sulphites in it and take supplements and natural medications to aid sulphur metabolism. AND IT'S WORKING! It's so bloody hard but it's working!
But here's the thing folks, do you think after what I have gone through, that the system wants me to get better? That 10 years and tens of thousands of dollars of medications, procedures and appointments later, being on benefits and clear evidence of medical neglect... That they're going to just let me get better, get the evidence I need and finally get out of this rut? OF COURSE NOT!
Why you may ask... Now this is where I have to get really careful. If you try and see it from my position, why would I go back to a full-time position without appropriate treatment options and medical help? I've lost two jobs because of this condition before, i'd be a moron to not get this thoroughly and accurately tested. So that I can have the proof and the tools I need to get better so I can be a self sufficient human again. Being honest, a girl might actually want me long term if I can do that! So yes I should just be able to do the correct pathology tests and put this thing to bed yes? If only it were that easy!
In order to test for sulphur related metabolism issues, Thiosulphate and Sulfocysteine levels need to be addressed. I knew this already and the allergist I employed suggested the same (I have a copy of the pathology request). Well just so happens they did all the test except those two stating that "we no longer perform those tests".
On the same day, I had a new neurologist (waited 10 months to see) appointment, and I received the call from the allergist who's attitude was totally different than when we first spoke. He tried to tell me that even though the key tests weren't performed, that the results were negative because the Sulphite levels in my urine were low, which is a load of s**t because as I already explained the body transforms Sulphites into Sulphates before it passes them. That happened the same day this neurologist once again completely goes against the findings of my medical team and says there's no further necessity to explore neurological treatments/investigations. C'mon it doesn't take a rocket surgeon to suspect foul play!
So here I am, in Melbourne. With a new allergist appointment on the horizon and a dietician booked for this coming Friday, hanging on by a thread. My accounts and devices I have been extensively hacked. I can't trust VPN's and AI has full control. I don't want to destroy the system! I just want to get back on my feet and be left alone by Big Brother. Yes I do want radical reform and I believe we should be doing so much more to protect citizens. Consumable companies can't keep getting away with adding toxins just to preserve shelf-life and cut costs! Additionally I thought freedom of speech was something we were all brought up to protect. The way the world is and the technological risks we have allowed is destroying everything at a horrific rate. I want studies to be conducted on the effects that Sulphites have on neurodivergence. I want us to feel free again!
Now let me get better! Let me keep trying to achieve my goals and I promise I will be able to become self sufficient and devote what remains of my working years to pursue getting our data sovereignty back and attempting to right wrongs with software solutions that are going to benefit everyone! Money is such a horrible man made construct that they've designed for you to become obsessed with and f**k over your friends if it's thrown your way.
Dougie.
Posted by dAQb-DominoFX - 1 vote and 0 comments
