I'm really not doing well and I'm thinking the underlying infections I have (EBV, SIBO, probable Coxsackie) could be what's triggering my MCAS in the first place. I was diagnosed with idiopathic MCAS a few months ago (I've never been able to find any specific triggers and it developed out of nowhere) and I have low-level symptoms frequently or they flare randomly.
I haven't made much improvement on my MCAS meds over the last couple of months, as it seems like they work a bit and then stop. Initially I thought that they just weren't working at all and MCAS was probably not a correct diagnosis but when I switched H1 blockers, my symptoms got better again for a week but then returned.
I've also noticed that my MCAS symptoms seem to get worse whenever I have a flare of infection-type symptoms (sore throat, body aches, flu feeling). All of this makes me strongly suspicious that these infections are somehow behind my MCAS.
I have a bottle of acyclovir for my EBV but my doctor doesn't want me to start anything new until my MCAS is controlled. I don't think that time is coming though.
I'm curious if anyone here has had success treating infections while dealing with MCAS and if the treatment improved your MCAS at all. I know IVIG has helped people with MCAS but that's not an option for me right now and I'm really more interested in experiences with antivirals, antibiotics, etc.
I haven't made much improvement on my MCAS meds over the last couple of months, as it seems like they work a bit and then stop. Initially I thought that they just weren't working at all and MCAS was probably not a correct diagnosis but when I switched H1 blockers, my symptoms got better again for a week but then returned.
I've also noticed that my MCAS symptoms seem to get worse whenever I have a flare of infection-type symptoms (sore throat, body aches, flu feeling). All of this makes me strongly suspicious that these infections are somehow behind my MCAS.
I have a bottle of acyclovir for my EBV but my doctor doesn't want me to start anything new until my MCAS is controlled. I don't think that time is coming though.
I'm curious if anyone here has had success treating infections while dealing with MCAS and if the treatment improved your MCAS at all. I know IVIG has helped people with MCAS but that's not an option for me right now and I'm really more interested in experiences with antivirals, antibiotics, etc.