(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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,

@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

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,

I was diagnosed in January 2018. Still to this day - no improvement. I've had things get worse then get a little better but not much improvement of the initial damage done in my lungs. I'm now on the inhaled Amikacin along with the big 3 still. Hopefully it will help.

I'm very curious about alternatives to the Big 3, which I've been on for 4 months. I have recently had side effects, which I believe are from the azithromycin and I'm seeing my doctor next week. I am not prepared to just tolerate the side effects because of the benefits of treating the MAC and will be asking for a referral to a MAC specialist in a larger city near us. The Amikacin sounds like an expensive but reasonable alternative (is it used alone or in combination with other drugs?) and it will be one of the things I will research and discuss with my doctor when I see him. Having MAC has already cost us a lot of money in terms of cancelled trips, reverse osmosis system, etc etc and had a huge effect on our quality of life so another cost is something that I can live with if I have to.

Thanks for everyone's contributions to this forum. I have learned here than anywhere else and, although I may have become a nuisance to my doctor, I feel it benefits me in my efforts to get this disease under control.

@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?

I am seeing the respirologist on June 19 and will get a referral to the Mac specialist either from him then. Not sure how long it will take.
I’m seeing a gastroenterologist in early September as I’m not aware that I have GERD but will discuss with him. How great would that be if treating GERD protected me in the future! Thank you for this encouragement.

I have learned so much about a disease that I’d never heard of before last year, most importantly that I need to educate myself and be my own advocate.

I am thankful that I found this forum as Mac is an isolating disease and the forum is one place where I don’t feel like I’m burdening others with yet more Mac talk :).

@kathyhg I am so glad that you found this site too. It was a Godsend to me when I first joined. Would that specialist you may get referred to in Toronto by any chance?

@kathyhg I am so glad that you found this site too. It was a Godsend to me when I first joined. Would that specialist you may get referred to in Toronto by any chance?