My Story
How It Started
What began suddenly with unexplained skin reactions has evolved into a complex, debilitating condition that remains undiagnosed.
Since childhood, I’ve always had some form of health problem whether physical or mental, starting with eczema, fatigue, body dysmorphia, ADHD , and the emotional impact of traumatic experiences.
My health drastically changed when I was 18, I woke up one day with a severe rash that progressively got worse, it itched and crawled and was different to the eczema i had when i was a child, no one could identify the cause and the rash only progressed. I became sensitive to many things, foods, chemicals (like washing powder, treated water, deodorants), and even binders in medications and supplements. It took years to realize that both food and environment were key triggers.
From age 21, I pursued years of relentless natural healing, I spent hours upon hours every day researching and dedicating all the money I had towards this; juice fasting, tinctures and almost every supplement/herb you can think of. Juice fasting briefly helped my skin, but the issue returned. In 2021 (28 years old), I completed a 30-day water fast and still experienced reactions during that time even though I wasn’t consuming anything.
2021 was a major turning point, for both better and worse, when I was prescribed prednisolone for my skin reactions. I started at 50mg daily and have only recently in July/Aug 2025 tapered downed and bridged to hydrocortisone instead (currently 12mg daily), I have been prescribed hydrocortisone at 20mg daily in addition to prednisolone since late 2024, I have needed to manage this taper and switch solely by myself given the complete lack of medical help I have.
The cortisone medications have improved (“masked”) the skin reactions mostly, but I still react severely to foods and chemicals.
The prednisolone has severely impacted my physical and mental wellbeing, it has worsened every existing mental health issue, caused extensive bone loss, caused muscle injuries and weakness leading to reoccurring injuries when I exercise and it has reduced the effectiveness of ADHD and pain medications only since beginning to taper after prolonged use a while ago.
In 2023, I was diagnosed with leaky gut and SIBO via a health coach, since then I’ve managed food reactions using prednisolone, following a low FODMAP diet, and by taking betaine and digestive enzymes every time I consume something other than water.
To give some context:
- Hugging someone or holding a baby wearing chemically washed clothes causes me to react
- Trying on new clothes not washed multiple times in plain water causes me to react
- Staying anywhere other than home, even hospitals or family members’ homes, causes to me to react which excludes me from any form of travel as well (I can take substantial measures to make medically required travel possible)
- It’s rare that I’m able to socialise now, but in a society that relies on food and drink for connection and gatherings, my strict diet limitations make this difficult
Many other daily limitations exist that no one I’ve ever met had needed to think about.
My symptoms are wide-ranging, persistent, and have severely affected nearly every aspect of daily life.
They include:
- Cognitive and neurological issues: memory loss (sometimes forgetting close relatives), severe anhedonia (inability to feel or remember any form of pleasure or reward), brain fog, panic attacks, and insomnia.
- Mental health challenges: anxiety, compulsive thoughts and behaviour, ADHD, and long-standing emotional trauma.
- Chronic fatigue and sleep disruption: extreme crashes, never feeling rested even after sleep and a persistent feeling of full body fatigue.
- Hormonal and sexual dysfunction: very low libido and sensation, anorgasmia, testosterone issues, and pelvic structural problems affecting function and sensation.
- Widespread pain and mobility issues: joint instability, muscular injuries, swelling, muscle spasms, and a history of fractures and dislocations.
- Gastrointestinal and immune symptoms: leaky gut, SIBO, bloating, skin rashes, food reactivity, loss of appetite, and suspected autoimmune dysfunction.
- Chemical sensitivities: strong reactions to common substances including treated water and detergents, severely limiting contact and environment.
- Structural and organ-related symptoms: pelvic organ prolapse, hernia, abdominal separation, urinary issues, and unexplained swelling in the groin and face.
This list is just a condensed overview, but it gives a sense of how complex and interconnected everything is. These symptoms have continued despite medications, lifestyle changes, and numerous therapies, and many have worsened over time.
Current Medications
Hydrocortisone – 12mg daily
Dexamphetamine - 30mg daily
Diazepam – 10-20mg daily
Panadeine Forte – 8 tablets daily
Despite trying every possible avenue, including conventional, holistic, and functional medicine, I’ve been left without answers and without support. As I mentioned, I’ve seen countless doctors, contacted hundreds of professionals across Australia and overseas, and even travelled internationally in search of help but no one has been able or willing to help me or to dig deeply into what’s happening to me.
This is not a dermatological problem at its core, I believe that I have a multiple system problem, I need a full body review and diagnostic analysis. I need the help of a doctor (anywhere in the world) who truly wants to help me resolve this in any way appropriate, a doctor who is actually passionate about helping sick people get better, getting to the root causes and who can commit and understand how serious this is.
I don’t want to be left behind more than what I have, I want to experience a life without this level of chronic illness, i want to have pleasure in life, I want to achieve normal goals, I just want to move forward and be happy and healthy… I want to look forward to tomorrow.
My recent research into the symptoms I’m experiencing has led me to compile this list of conditions I need help ruling in or out, though I remain open to other possibilities a medical professional might consider.
Conditions
- Neuroimmune / Neuroimmune Dysfunction Syndrome (NIDS)
- D2R Autoimmune Encephalopathy (dopaminergic or limbic)
- Chronic CNS infection (possibly dental linked)
- CIRS (Chronic Inflammatory Response Syndrome) / Mold Toxicity
- MCAS / Histamine Intolerance
- Severe Mitochondrial Dysfunction
- Neurodegenerative or Genetic Syndrome (EDS-related / Connective Tissue + CNS)
- Paraneoplastic Autoimmune
Blood Tests & Assessments
Blood Tests Results -15-07-2022 - 23-04-2025.pdf
Sleep Physician Asssessment 06-09-2022.pdf
Bone Mineral Densitometry 29-06-2023.pdf
Conditions
Neuroimmune / Neuroimmune Dysfunction Syndrome (NIDS)
D2R Autoimmune Encephalopathy (dopaminergic or limbic)
Chronic CNS infection (jaw-linked)
CIRS (Chronic Inflammatory Response Syndrome) / Mold Toxicity
MCAS / Histamine Intolerance
Severe Mitochondrial Dysfunction
Neurodegenerative or Genetic Syndrome (EDS-related / Connective Tissue + CNS)
Paraneoplastic Autoimmune
Considerations
I'm seeking to get to the root cause of my issues and future diagnosis, potentially investigating a jaw cavitation as a contributing factor.
At age 23, I underwent major dental surgery following a prolonged dental infection caused by a failed extraction.
Since childhood, I’ve had ongoing physical and mental health issues, starting with eczema, fatigue, body dysmorphia, ADHD, and the emotional impact of traumatic experiences.
Things changed drastically when I was 18. I woke one day with a severe rash that worsened over time. Itched, crawled, and was unlike the eczema I had as a child. No one could identify the cause.
Over time, I became sensitive to many things, foods, chemicals (like washing powder, treated water), and even binders in medications and supplements. It took years to realize that both food and environment were key triggers.
From age 21, I pursued years of natural healing, juice fasting, tinctures, and countless supplements. Juice fasting briefly helped my skin, but the issue returned.
In 2021, I undertook a 30-day water fast and still experienced reactions.
That year was a major turning point, both better and worse, when I was prescribed prednisolone for my skin reactions.
I started at 50mg daily and am now on 7.5mg daily, though that fluctuates up to 25mg. While my skin has improved somewhat, I still react severely to foods and chemicals.
In 2023, I was diagnosed with leaky gut and SIBO. I manage food reactions using prednisolone, a low FODMAP diet, and by taking betaine and digestive enzymes every time I eat.
To give some context:
Hugging someone or holding a baby wearing chemically washed clothes causes pain
Trying on new clothes not washed in plain water hurts
Staying anywhere other than home, even hospitals, is unbearable
I can’t eat takeaway or dine out, making social gatherings and travel nearly impossible
Many other daily limitations exist that most people never have to consider
This is not a dermatological problem at its core.
The prednisolone has severely impacted both my physical and mental wellbeing. It has worsened every existing mental health issue, reduced the effectiveness of ADHD and pain medications, and caused:
Muscle injuries preventing me from exercising
Osteopenia
Abdominal separation
A hernia
And more
Current Medications:
Prednisolone – 7.5mg daily
Hydrocortisone – 10mg twice daily
Dexamphetamine
Diazepam
Panadeine Forte