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Bart

@giub4rt

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"From the river to the sea" we will be free
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Actemra and Darzalex represent what feels like my final major line of defense against treatment-resistant autoimmune encephalitis, and it’s even being used off label in MECFS. These aren’t ordinary treatments. They’re powerful immunotherapies that target different parts of the immune system. Actemra blocks IL-6 signaling, while Darzalex targets CD38-expressing cells, including antibody-producing plasma cells. Using these medications in autoimmune encephalitis is an experimental, high-risk approach with limited clinical evidence. The potential consequences include serious infections and profound immune suppression, particularly when combined with other immunosuppressive treatments. This is how far my disease has pushed me. I’ve exhausted many conventional treatment options. I’ve endured years of suffering, failed therapies, and devastating neurological decline. I’ve fought through insurance denials and enormous obstacles to access medications that many patients with my condition may never have the opportunity to try. This isn’t simply another treatment. To me, this is my last major therapeutic stand. And the most frightening part is that even after everything I’ve fought through, nobody can promise these medications will work. I don’t know whether the man I once was is still buried beneath all this brain inflammation. I don’t know whether I’ll regain my emotions, my memories, or the ability to fully experience life with my wife and son. But I fought like hell to reach this point, and I’m going to give this chance everything I have. I just want my mind back. I want to feel alive again. If there’s still a way back to myself, I intend to fight for it. My wife and son deserve that much from me. I would rather die on my feet than live on my knees. I do not fear the final battle. I fear leaving this world without giving everything I had.. I faced this disease with everything medicine could offer, endured treatments that pushed me to my limits, and fought like hell for my life. Whatever comes next, let it be known: I never backed down. #chemo #mecfs #spoonie #longcovid #autoimmune
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I don’t know how this story ends. But I’m still here, still fighting, still trying treatments, and still leaving room for my life to change. As long as I’m here, I haven’t lost.
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