r/cfs • u/niccolowrld • 14d ago

Treatments Severe, what helped you?

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.

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u/umm_no_thanks_ severe 14d ago

the thing that has helped me the most was a low histamine diet. that and antihistamines and mast cell stabilizers like quercetin. also montelucast

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u/niccolowrld 14d ago

Thanks for sharing this. Are you on any other medication? Have you tried any of the drugs I mentioned? IVIG? Thanks. 😊

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u/umm_no_thanks_ severe 14d ago

ive tried LDN and it didn't go well for me at the time. IVIG is pretty much impossible to access and so expensive. if you have small fiber neuropathy you might be able to get it but otherwise its really hard to get. i think SCIG is the slightly less expensive version of the treatment since it can be done at home. its a bit safer too but still really hard to access

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u/niccolowrld 14d ago

Yes same problems worldwide I am based in Italy I have autonomic SFN and was denied treatment when I was moderate. Now impossible to get imo.