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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
Thanks. I’m on ethambutol, rifampin and azithromycin. The only one I see causes irregular heart beat is azithromycin but I’ll do some more reading. I already have a pacemaker (is 63 and I got it at 55) so I’m super cautious about anything that affects my heart. I’ve been referred to a cardiologist and just waiting for the appointment. I’ll likely see my respirologist before I see the cardiologist, though, so I want to be prepared for that visit as well.
It might just be my experience but I find I need to be on top of things all the time. The respirologist I see treats a whole range of respiratory conditions and I think it’s time for a consult to the MAC specialist - thus my preparation. The respirologist told me st the onset of this process that he’d need to refer me if there were complications with my treatment.
I have leaned so much in this forum. Although no one gives advice, it is helpful to hear other people’s experience as this helps me to formulate questions and to make decisions about my own care.
Thanks again,
Replies to "Thanks. I’m on ethambutol, rifampin and azithromycin. The only one I see causes irregular heart beat..."
@kathyhg Hi Kathy! I really liked your last sentence. That is the precise intention of this group. I just met with my Mayo doctor last week and we discussed how each individual with mac should have a tailor-made treatment plan. Beware those that only use the Big 3 treatment plan or want to jump on those three meds at the first inclination of mac infection. BTW, my dr also said again that the biggest culprit of bronchiectasis and mac is GERD, otherwise known as acid reflux. If you treat that, then you may likely stop the infection and reinfection of mac. Many people have what is known as silent reflux; meaning there are no apparent symptoms. I make a list of questions before I see my dr also. When will you see your mac specialist?
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@kathyhg....agree with you re all valuable information shared on this site....have you also signed into NTMINFO.org for links to additional information...or gone to youtube for videos...l just typed in "NTM info" and a whole slew of awesome videos showed up....these are just a few of the resources from the web sites......also National Jewish Health will be having their annual NTM workshop for NTM patients and families on Saturday Sept 21,2019 from 830am to 4pm in Denver if you live near there or can get there...great news....it will be video taped and posted on line a few weeks after the event...so we can hear /see it if we cannot attend...Tdrell