I’m open sourcing my health logs and data in my journey to recover from Long COVID/ME in the hope that it will help others fighting the same fight.
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Current Plan (August 2026)
Since mid-January 2026, I have been in a severe, 24/7 bedbound crash which started after GI issues from an adverse reaction to microdosed tirzepatide.
I do not believe I will be recovering from this crash naturally. I will need to find something to achieve the next goal: get out of bed.
Strategies
With the rapid progress of AI, I have become more and more convinced that the answer to everything is to collect more data. I am continuing to get as much testing as possible.
I am in a bit of a lull at the moment in terms of cracking my case. I hope to make great strides by analyzing my Amatica data (expected late September).
Interventions:
Low dose Abilify doing well - at 0.3mg/day, up from 0.05mg/day starting March 12, phone and laptop tolerance has increased, light tolerance has increased massively, feeling less physical “weight”
Started weekly low-dose rapamycin at the beginning of June. Since I started, my PEM episodes seem to be shorter and less intense.
My cytokine panel came back with a clear chemokine and adhesion signal (IL-8 at 7.6x) while every conventional inflammatory and T-cell marker was normal. That is the first result in a while that changed my plans. Next up: pravastatin, then either Maraviroc or colchicine.
The same panel was low on the interferon and IL-12 axis, so I have deprioritized baricitinib.
Upcoming Testing
I’ve had a unique episodic pattern in my disease: