Since so many people asked for details about treatment in my last #LongCovid thread, I thought I'd do a detailed thread on it. I'll start by saying that this was with guidance from my doctors. I know medical care is inaccessible to many but please be cautious.
Things that have helped me the most:
- d-ribose was the first thing that allowed me to get out of bed for more than a few minutes. I credit this with turning the corner from bed bound to "just" home bound.
- CoQ10 gave me some more energy and clarity.
- d-ribose was the first thing that allowed me to get out of bed for more than a few minutes. I credit this with turning the corner from bed bound to "just" home bound.
- CoQ10 gave me some more energy and clarity.
- NADH is the third supplement that has made a real difference in my energy levels.
- B1 and B12 plus a multivitamin
- DHA
- D+K vitamins
- Floradix for anemia
- B1 and B12 plus a multivitamin
- DHA
- D+K vitamins
- Floradix for anemia
- Dexedrine for my brain fog. This was the big game changer for me in terms of my ability to think clearly and start writing again. Only issue is that I have to take tiny doses and can't take it every day because it impacts my heart rate and makes my autonomic system go haywire.
- Ketotifen for mast cell, histamine issues.
- Propranalol for POTS unless my BP gets too low.
- Mestinon, I'm on the fence about this one.
- Meditation and breath work to calm my autonomic nervous system.
- Propranalol for POTS unless my BP gets too low.
- Mestinon, I'm on the fence about this one.
- Meditation and breath work to calm my autonomic nervous system.
Those are the things that have made the most difference for me.
Based on the things that have helped me, I'm fully on board with the idea that all of my symptoms are tied to endothelial damage and mitochondrial dysfunction. The actual cause of that damage, I don't know.
Based on the things that have helped me, I'm fully on board with the idea that all of my symptoms are tied to endothelial damage and mitochondrial dysfunction. The actual cause of that damage, I don't know.
The current theories I'm most interested in are micro-clots, viral persistence, autoimmunity, and endothelial damage caused by the initial infection. I suspect there is some combination of these things happening in #LongCovid.
With that in mind, things I'd like to try:
- Anti-platelet meds for micro-clots. #TeamClots
- HELP apharesis also for clotting.
- Protease inhibitors to address possible viral persistence.
- Something to address NO production.
- Hyperbaric Oxygen Therapy.
- Anti-platelet meds for micro-clots. #TeamClots
- HELP apharesis also for clotting.
- Protease inhibitors to address possible viral persistence.
- Something to address NO production.
- Hyperbaric Oxygen Therapy.
There is so much we still don't know about #LongCovid and #MECFS but I'm seeing new research emerging every day. I'm seeing some Long Covid folks trying to distance our illness from ME/CFS but I've learned so much about treating my symptoms from existing ME/CFS research.
I strongly believe that, even if there are differences in some details, there is huge overlap between all post-viral illnesses and we are stronger together working toward a cure. #pwME #MECFS #LongCovid #NEISvoid
If you're looking for more information and resources, here are some of my favorites:
@itsbodypolitic
@MEActNet
@gezmedinger
@jenbrea
@longcovidadvoc1
@CortJohnson at Health Rising
@itsbodypolitic
@MEActNet
@gezmedinger
@jenbrea
@longcovidadvoc1
@CortJohnson at Health Rising
Link to the original thread if you're interested in my Long Covid Story.
https://twitter.com/ECooperAuthor/status/1502792445670531072?s=20&t=ar9g6m8WJzVMS77zUPBaDA
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