Comment from Amy Mitchell
AnonymousSupportIndividual
Summary: The commenter, who was an author on an LCAP committee, advocates for the research and repurposing of antivirals and monoclonal antibodies to treat lymphocytopenia and other symptoms of Long Covid. They provide a personal case study showing how these medications improved their own lymphocyte subsets and request that the agency consider these protocols for long-term therapeutic treatment.
I am writing to advocate for the research and repurposing of antivirals for the treatment of lymphocytopenia due to COVID and Long Covid. Antivirals could possibly benefit other conditions and symptoms from chronic COVID infection/Long Covid, but they have measurably improved my lymphocytes subsets which were deficient after COVID infection starting in 2020. Monoclonal antibodies Evusheld and Pemgarda, plus subcutaneous immuneglobulin infusions, have also improved my immune health and LC symptoms. The antivirals that have helped me are maraviroc 300mg twice daily, Truvada TDF form 1 tablet once daily, Stribild 1 tablet once daily, Paxlovid (as directed but for longer courses such as 20-30 days), and also Tollovid supplement 3 capsules 4 times a day. My attached chart shows my lymphocyte subsets from 2018 prior to COVID to present day. The deficiency began after my infection in 2020 and has resolved with my current combination of Stribild, maraviroc, Pemgarda, Tollovid, and Gammagard immuneglobulin. I take Truvada instead of Stribild during acute COVID infections and take Paxlovid for extended courses. Also attached is LCAP's book A National Treatment and Research Agenda for Long Covid. There are research references cited in the book demonstrating the potential efficacy of the drugs and antibodies I've mentioned here. My doctors believe I have chronic viral reservoirs of SARS-COV2, particularly in my bone marrow due to B cell suppression, that are treated by these antivirals. Long Covid has been neglected by research, dismissed as a fatigue syndrome goven palliative care, but with my case study I believe I demonstrate the potential for lymphocytes subsets as a biomarker and antivirals plus antibodies as long-term therapeutic treatment. Like HIV, we need sensitivity panels and viral detection/load tests, but I believe I have demonstrated an alternative that can be implemented now. Please also consider the other medications and research protocols for LC described in the book. I was an author on this LCAP committee. I took our research one step further with medical oversight and trialed the drugs myself. I believe there are many others out there like myself who would benefit from repurposed HIV antiviral therapy. Thank you for your consideration. I am available for further discussion regarding my case study and LCAP's book.
See attached file(s)
