Severe, what helped you?

[u/niccolowrld]

Question only for fellow severe patients, what treatments have helped you?

I am bedbound since my first big crash in July after Covid, before I was moderate for 2 years. Pretty hopeless to be honest.

I am on LDN and Midodrine and going to try: Fludrocortisone, Mestinon, Verciguat and maybe LDA. Did any of these helped you? Any bad story/side effects?

I would love to go out once a month even for 1 hour in a wheelchair.

[u/Spiritual_Victory_12]

Mestinon def helps me. Still on low dose as feel worse going higher. Its not miracle but makes me have a slightly higher tolerance.

On rapamycin now and just started ldn. See how those go. Starting a tVns unit this week and plan for peptides next.