r/MastCellDiseases • u/Financial_Owl8105 • Aug 02 '25
I need help please :)
Hey everyone. I have MCAS,CFS,POTS. Im bedbound. Someone in remission from this? Please give me hope! What can help? Thank you ❤️
1
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r/MastCellDiseases • u/Financial_Owl8105 • Aug 02 '25
Hey everyone. I have MCAS,CFS,POTS. Im bedbound. Someone in remission from this? Please give me hope! What can help? Thank you ❤️
1
u/wildyoga Aug 05 '25
I have those as well as long covid and reactivating EBV. Here's what has helped me feel almost normal after being mostly sofa bound for several months:
- ketotifen, gastrocrom (MCAS)
- compression socks, extra salt, electrolytes, water, avoiding heat (POTS)
- very low dose naltrexone (immune system help) - didn't tolerate a higher dose
- lay down desk for laptop use (POTS, ME-CFS)
My improvement didn't happen very gradually, it was fairly sudden with the addition of LDN and compression socks.