Hey, my mcas doc wanted me to try a small dose of cyclosporin. I cleared it with my lyme doctor, but I’m still nervous about trying it. Anyone have any experience/thoughts with/on it?
hi Bailey, its not something i have looked into myself - but i can understand your concern around using it
on the other hand i can also see why an MCAS doc or any doc really might want to try it in lyme patients - as its seems pretty clear that especially in the lyme population that has been sick for a long time - there seems to be a strong auto-immune and or immune disturbance / over activation component that is adding to if not the direct cause of most symptoms
my understanding its a rather broad immunosuppressive - and that would tend to be counter to conventional wisdom in a person dealing with an ongoing infection - much like corticosteroids ( immunosuppressant) which were tried in the early days of Lyme treatment and the trials showed worse long term outcomes with steroids.
that said some LLMD’s - eg the “bart guru” Dr M - do combine low dose corticosteroids with antibiotic treatment - especially with bart and its complications without obvious ill effects - so maybe low doses of cyclosporin could be used similarly ?
i think if it were me i might try to do a little digging into cyclosporin’s mode of action and on which parts / cells / signalling in the immune system - vs the bits that we think are most necessary for fighting chronic infections - like NK cells - and see if that lends any weight one way or another
hope its of some small help
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Thanks @garzie ! I’ve so far chickened out and kicked the decision down the road. I’m trying to get dupixent covered which I’m much less scared of