TL;DR - Have a cluster of dysautonomia and PEM symptoms that are unchecked and leave me pretty disabled ~3 days a month (unable to regulate my sense of body temperature, vasoconstriction, tachycardia, POTS, OH, etc.). Looking for suggestions for treatments.
Longer version:
- Covid in April 2022 after 3 vaccines
- LC symptomology develops in ~June/July 2022
- Symptoms initially believed to be cardiac in nature, but no actual cardiac conditions ever identified after many tests (echocardiogram, CT, MRI, EKG, dozens of blood and urine tests – uncovered the Covid-caused diabetes)
- Circa Nov 2022 DX with LC and T2D from Covid
- Cardiac issues ruled out, remaining non-T2D symptoms are all consistent with various clusters of dysautonomic conditions
- Current theory from LC specialist is that either my immune system is continuing to attack my body or viral reservoir, no specific treatments other than rest.
- Initially, LC specialist felt I might be better by July-Aug 2023; however, it’s Feb 2024 and while I am better, I remain not well
Would love to hear any suggestions for treatments or clinical trials as I have now lost hope that I will get better but also am staring down whether or not I can continue to work.
(USA/California-based if it matters)