Help Stevan Fight COVID Complication

I am organizing this Go Fund Me for my brother Stevan. In short, he is suffering from immune-mediated Parkinson-like symptoms due to COVID-19. The symptoms are devastating and include CONSTANT INVOLUNTARY MOVEMENTS OF HIS HEAD, neuro-cognitive decline, clumsiness, orthostatic intolerance, difficulty walking and many more. Due to the chronic brain inflammation, the symptoms are progressing fast and he needs several immune-modulating therapies to reverse it. The sooner the therapies start the higher chance of recovery.

Stevan is only 29 years old and he is my idol. He lived a life truly worth living. He was dedicated to every aspect of his life and an active member of the community. He loved playing basketball, going to the cinema, and collecting TCG. He has helped numerous people throughout his life and he was my first “go-to” person whenever in need. He used to build long-lasting relationships and was very social. He has just completed his second MSc degree and moved in with his girlfriend. It was supposed to be a beginning of a lovely new chapter when everything happened.

His health issues started in October 2021 with an event related to Covid 19. Immediately after the event, Stevan started experiencing neurological symptoms. He was lightheaded and dizzy when standing, each leg felt ten times heavier, and he couldn’t walk. He ended up in the emergency room, but there were no lab results that could explain his symptoms. He was advised to rest for a couple of days and see the development.

The symptoms were progressing and now included muscle twitches and burning sensation in extremities, migraines, blurred vision, brain fog, cardiovascular issues and many more. Stevan was redirected to see a neurologist. After thorough tests all came clean, he was dismissed and redirected to visit a psychiatrist. The psychiatrist also dismissed Stevan claiming that his issues are neuro-immunological. As nobody was taking action, and Stevan was heavily suffering, his general practitioner decided to intervene.

After being prescribed a short dosage of corticosteroids, he felt complete remission of symptoms that lasted for about a month. Unfortunately, after that period, symptoms continued to progress - his head became tilted and he was redirected to the immunologists. Again the lab work came back clean. He was told that it is clear that he is suffering due to covid 19 event, however, no medication would be used. He was told that symptoms usually auto-resolve within months up to 2 years. With this Stevan happily continued his normal life. Some symptoms were indeed improving, such as brain fog and the ability to concentrate. However, the post-exercise malaise and head tilt continued to worsen.

In March 2022, there was another covid 19 related event that had a tremendous impact on Stevan. He suffered severe symptoms including sensitivities to all sensations like light, sound, temperature and even touch. He loved being scratched, but now upon touching him he would flip out. He was able to hear water going through the pipes. He could not go out in the sun without sunglasses. A slightly higher temperature would make him collapse in the street. He developed food sensitivities to almost everything. Even while eating 3000 kcal of healthy food, he lost one-third of his weight. He also lost a lot of hair and became completely pale. For the first time ever, he suffered from anxiety attacks that in the end cost him his relationship.

At this point, he was administered to the hospital. Again all the tests came clean and he was diagnosed with a Functional Neurological Disorder. As he was told, there was a software bug in his brain causing all the symptoms but no structural damage was made to the organs. With this, he was left with physical therapy that was aiming to retrain his brain. Unfortunately, there was no progress, and the symptoms continued to worsen. Once again he was given a round of corticosteroids and felt 40% better. But the effects were not long-lasting.

This was the breaking moment in which Stevan decided to take things into his own hands. Being a very educated person and holding two master's degrees (one from ETH Zurich - the university Einstein himself attended); he started doing what he knows best - scientific research. Within months, Stevan was able to obtain an enormous amount of information and connect all the dots. It was then time to prove the theory. Every lab test that Stevan did out of his own pocket started to come back positive. The testing was extensive and here he shares his findings:

****

I was always told that my labs are fine, there is no inflammation or autoimmunity and that I have a software bug in my head.

Once I started doing tests on my own, I found positive ACE2 and MAS1 autoantibodies together with m3, ETAR, a1 and AT1R. These are the autoantibodies proving autoimmunity. This would explain why I respond well to corticosteroid therapy as we have seen twice already.

According to the most recent scientific research, the above-mentioned autoantibodies correspond to what is called Long Covid today. The way I would explain Long covid is an immune-mediated chronic systemic inflammation. In my case, it also includes an immune-mediated disruption of the autonomic nervous system also known as dysautonomia. It affects many systems and its very difficult to diagnose as it requires special tests that doctors for whatever reason do not want to order:

- I had to do an MRI of the heart myself to prove that I have pericarditis.

- Check the s100b marker and perform Neuroquant brain analysis to prove that I have chronic brain inflammation

- Check TSHDS to prove Small Fiber Neuropathy

- Found high CCL5 that indicates systemic inflammation

- Th1/Th2 ratio imbalance is a sign of a dysfunctional immune system and chronic inflammation typically observed in autoimmune disorders.

I could go on like this forever. The point is that nothing is right and my entire body is inflamed. I was always saying that anti-inflammatory drugs and even simple NSAIDs were helping me, but all doctors were convincing me it was a placebo. Finally, according to the CANDO study, FND (My official diagnosis) is caused by chronic inflammation.

The biggest concern is mitochondria damage coming from chronic inflammation. According to research, mitochondria damage is driving the neuro-degeneration in diseases like Parkinson’s. There are a couple of studies and research from Australia showing that brain inflammation in Long Covid is neuro-degenerative in a similar fashion to Parkinson’s and acts through NLRP3 inflammasome. And as we can see, my symptoms are constantly getting worse. 

Luckily, research also indicates immune-modulating therapies that could potentially reverse everything. The best combination of therapies would be immune adsorption or INUSpheresis to clear the autoantibodies. Followed by IVIG to support the immune system and Small Fiber Neuropathy. Finally stem cells to reverse neurological damage and dysautonomia. Unfortunately, I have managed to spend my savings of tens of thousands CHF running these additional tests and now I need help.

****

You may have noticed, but I was speaking of Stevan in the past tense at the beginning of this text. I did it because this is not our Stevan anymore. We cannot recognize what he has turned into. It is sad and painful watching him struggle. He is unable to take care of himself. He can’t cook, he can barely feed himself. Even doing the simplest activity, like watching a movie, is impossible for him. This is no life anymore, being bedridden and left alone to fight this disorder. We should try to help him while there is still a chance to get our Stevan back.