Undiagnosed Long Term Disease HELP!

Hi all
Brief rundown, I am a 23-yr old male and have been chronically ill now for over 24 months, bedridden, extreme pain, headaches, dizziness, the list of symptoms is longer but will get into it later basically I am completely and totally dysfunctional. Have seen more doctors and specialists than I can count, spent all my savings on tests and drugs and specialists, no results or even an inkling of what’s wrong so far. Am now in debt, gave up my Uni studies, gave up my job, gave up my fitness, all due to pain and extreme fatigue.
After 2+ years (probably closer to 3) I am now compiling all my medical info and my medical journey from start to finish to post online in hopes someone can come up with something that I or my doctors haven’t thought of.
So, starting from the beginning.
Prior to the beginning of my illness, I was extremely fit and healthy, I am a 6’5 (198cm) tall 20 yr old male at the time, weighed approx. 85-95Kilograms (190-210 pound), did muscle and strength training 4-5 days a week and ran 20+Kilometers (12.5 miles) a week and periodically competed in long distance marathons, I ate an extremely healthy basically Ketogenic diet but not crazy strict and still allowed myself the occasional treat or cheat meal like pizza and ice cream etc but for the most part stuck to my diet.
On special occasions I would drink alcohol with friends and get a bit rowdy out in town, when I did drink, I also smoked cigarettes because I enjoy them but didn’t smoke full time, I only smoked when out drinking. I would not go out often, maybe once per 6 weeks, full transparency I have tried other drugs, cocaine, MDMA but hadn’t touched any of them for at least 6 months before becoming ill and never did them in large quantities or regularly either.
Now the beginning of the illness, in mid 2023 I moved into a share house with some friends from school after 4-5 months of living there a rash appeared on the back of my left hand the rash was intensely itchy and it was honestly a struggle to not itch the bloody thing, my general practitioner (GP) suspected a fungal infection and prescribed anti-fungal cream, which had no effect. The rash worsened and along with it came extremely poor sleep needing 10-12 hours of sleep a day and if I didn’t get that much, I would be completely dysfunctional, brain fog, memory loss, headaches. Note that prior to the rash appearing I would sleep 6-8 hours a night, felt extremely refreshed and healthy every morning. I had a photo of the rash but have unfortunately lost it due to my old phone breaking that the photo was on, the best way I can describe the rash is similar to a scabies rash, lots of small pustules/pimples that had pus in them.
This photo is the best image I could find that looks similar https://assets.nhs.uk/nhsuk-cms/images/M2600127-Red_papules_on_the_skin_due_to_scab.max-600x600.jpg
Next we tried prescribing permethrin cream as my GP and I thought it may be scabies, the cream worked and the rash disappeared, I completed the treatment and took all precautions to ensure the removal of all scabies mites from myself, clothes and bedsheets, nevertheless the rash came back and then spread from the back of my hand down onto my inner wrist and then to my inner wrist on my other hand also.
At this point the appearance of the rash changed, on the back of my hand it looked more like a lupus discoid rash as seen in this photo https://www.rheumatologyadvisor.com/wp-content/uploads/sites/18/2019/01/discoidlupusssss2839975_1335621.jpg
However, my inner wrists still had the pustule pimple looking rash.
At this point my GP prescribed ivermectin as we thought it may be a stubborn type of scabies or some other sort of parasite that survived the permethrin, again the ivermectin made the rash disappear but it came back again in force. Rash biopsy came back as just eczema no fungal traces or parasites found.
My GP then referred me to a dermatologist, during the wait time for the dermatologist all my symptoms worsened, rash became inflamed and extremely itchy to the point I was ice bathing it every day, the itchiness worsened when the rash was heated and during the night when I was sleeping. My sleeping became horrendous needing 12-14 hours a night to even remotely function anything less I couldn’t move, couldn’t think, severe memory loss, horrible pounding headaches, dizziness. I started experiencing whole body pain mostly in my muscles best described as similar to a really bad fever when your whole body is aching but like 10x worse.
Upon finally seeing the dermatologist he prescribed me Diprasone steroid cream which cleared up my rash completely after consistent application, to this day it remains clear but in the spots where the rash was concentrated mostly on the back of my left hand and inner wrist my skin is slightly numb and tingly and the rash occasionally reappears, when it does I reapply the Diprosone cream and it usually clears up in a few days.
Despite the rash going away my other symptoms remained, body pain, headaches, horrid sleep along with some new symptoms, intermittent blurred vision, intermittent tunnel vision and soon after it got really bad, all throughout the day I would start basically passing out from extreme exhaustion I think, I was struggling to stay awake all day and would regularly fall asleep at my desk at work, I also started experiencing extreme insatiable hunger, I was eating copious amounts of food and could not satisfy my hunger or give myself enough energy to function, the really bad part started next, my pee began turning darker, sort of brownish and smelt like sulphur, at this point obviously I was really worried my liver or kidneys were failing and had already visited the hospital multiple times, one time I was given ceftriaxone and a script for doxycycline another time I was told they couldn’t find anything wrong and they were too busy to deal with me basically and sent me away. Please note that there was and is definitely something wrong with me I am just unlucky enough to live in Hobart Tasmania which unfortunately has ever decreasing healthcare funding and therefore ever decreasing quality of healthcare and was unlucky enough on one of my visits to get some nurses and a doctors who weren’t particularly helpful or passionate and perhaps this is my built up anger talking from being sick for so long but they weren’t particularly intelligent either.
Note that at the time I worked in a pathology lab and was at university studying medicine, so I had and do have some reasonable understanding of human biology, diagnostics and healthcare in general.
At this point I left my job as I couldn’t work, didn’t work out anymore, stopped studying because all I had energy to do was lie in bed, eat, shower and see doctors. Symptoms again worsened, started experiencing testicle pain, no longer got morning wood and still rarely do, experienced periodic ED and still do, no sex drive anymore and prior to this I was a very horny young man, I say this because sexual health is important to overall health and if young men aren’t horny there’s usually something horribly wrong with their health. Started experiencing mostly lower back pain and neck pain.
Again worsened, began forgetting how to do menial tasks like holding a knife and fork and cutting with it, really severe memory loss, like I would forget things I was thinking about less than 30 seconds ago that I thought were important, began skipping over words and sometimes slurring and also began experiencing uncontrollable body twitches in my lower body periodically, similar to a myoclonic jerk but it was almost exclusively my lower body, hips down.
Again, lots of hospital visits, repeatedly told they couldn’t find anything or couldn’t help me in the ED as they didn’t have the knowledge or resources, despite my brain and liver shutting down.
Eventually I had a brain MRI which was normal (note I do have 2 arachnoid cysts on my brain, but we have known about them since I was very young, and they remain unchanged and are not the cause of symptoms.)
Anyway after a few months some of my symptoms eased up a bit, motor skills improved, wasn’t forgetting how to hold my knife and fork anymore lol, my pee stopped being brown and smelling, but almost all my other symptoms have persisted until present day. Fast forward from then until now, I have seen 4 neurologists, a neurosurgeon, a cardiologist, 2 immunologists, an ophthalmologist, a Specialist GP, 10-12 hospital visits, more visits to my GP than I can count, I’ve had hundreds of pathology tests (more than I’ll be able to include here so please if you have an idea ask for a test and I’ll let you know the results if I’ve had it done.), an EchoCG, an EMG, I have an EEG this coming week, I’ve had a contrast CT of my brain, an MRI of my entire spine, an MRI of my brain and probably lots I am forgetting about, I can send all the imaging and pathology results at anyone’s request for more information.
So from when my symptoms started to ease up (Brown Pee + severe neurological deficits) until now these are the symptoms that have persisted, headaches, dizziness, blurred vision, neck pain, whole spine pain mostly in the lower spine, intermittent testicle pain that radiates up my abdomen sometimes, intermittent ED, no sex drive, no morning wood, whole body muscle pain, stiff legs and back in the mornings upon waking up, sore throat in the mornings upon waking up, extreme chronic fatigue, extremely poor sleep quality, intermittent insatiable hunger, recurrent rash on back of hand uncontrollable muscle twitches and jerks and occasionally an itchy anus that worsens at night. (Note when I say intermittent, I mean some days I have it some days I don’t or even sometimes it will come and go multiple times throughout the day.)
Recently I found two things that seemed to have improved my health by a small margin but not completely.
I have previously tried this due to my itchy anus as mentioned above over a year ago, but I tried it again recently as a hail mary anyway first was I tried a multi week regime of anti-parasitic drugs, first week was 600mg of mebendazole per day for 3 days plus 600mg of pyrantel per day for 5 days. Then 10 days no drugs and repeat. I have been experiencing less pain since doing this and my anal itch alleviated but came back again. I am planning to ask my GP for some prescription anti parasitic drugs like praziquantel and more ivermectin or fenbendazole to treat parasites in my adipose tissue and muscles as opposed to my digestive tract, I have been regularly inspecting my stool for signs of parasitic infection and cannot find anything definitive.
Second was I started eating a huge quantity of eggs, I got out of bed one morning a few weeks ago and had a coffee with sugar which I don’t usually have but decided to try that morning because of how tired I was, after having the coffee my pain worsened and the frequency of my body twitches increased, at this point I felt really horrible and my extreme hunger started kicking in, the only thing I had in the house at the time was eggs so I cooked myself 8 eggs and ate them all which I don’t usually do, 8 is a lot, I eat a normal amount of eggs 1 or 2 a few times a week most of the time. An hour later I felt the best I have felt in over 2 years, pain was alleviated but not gone, headaches alleviated but not gone, my whole body felt like it had energy for the first time in forever, since that day I have been eating minimum 6 eggs a day and sometimes as many as 12 – 18 eggs. Each day my sleep improved and my overall pain levels reduced, I am now at the point where I have little to no pain for most of the day, it is still the worst when I wake up in the morning but eases up quicker and isn’t as bad however all my other symptoms still remain, vision issues, headaches, testicle pain, ED problems, sleep is still really poor its just better than what it was 3 months ago. But yes, my energy levels have vastly increased, I can actually do stuff now instead of lying in bed all day and my pain levels have vastly decreased.
Obviously, eggs aren’t a cure to anything but it’s interesting that they have helped and of course may be a clue to finding a definitive diagnosis.
If anyone has any idea what this could be please tell me and if anyone wants info about my pathology tests or imaging results, please ask and I will send it through
I have cleared of a number of diseases including but not limited to
Diabetes, some but not all autoimmune conditions, bacterial infections (we think), fungal infections (we think)
Let me know what you think or if anyone wants more information. Thanks for your time.