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

@america do you trust your docs implicitly?

Yes I do! He’s a great doctor. My only regret is that I’m almost 5 hours away so I can’t be there as often.

I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can't imagine taking these meds for the next year or more!! I'm sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I'm a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B

@america For half of the year, my doc is over 24 hours away. I knew that going in, so we developed a care plan that included getting to know his nurse & check-ins/questions by phone & email with either of them. It is working well for me.

Hi Sueinmn! Thanks! I do speak with the nurse from time to time. I feel being closer would help but for now I’ll do what I need to. This disease is lot more complicated than I thought.. this group has helped me in many many ways. But it’s scary having one vocal cord, Sjogrens, RA, restless leg syndrome and so much pain daily. I do get discouraged from time to time. I am thinking about moving because in the Tampa area I think it’s infested with Mac. I would love any thoughts on this. Thanks again Rita.

@america Hi Rita,
I would think very hard about moving to avoid MAC (or any other single germ) - I have now learned that MAC is everywhere, even in our home water supplies, etc. I don't know if anyone could give you a definitive answer on where to go to completely escape it.
Most of us on this group have multiple health issues, the trick lies in figuring out how to live as well as possible without getting sick(er.) I personally focus on what I CAN DO, even if I cannot do it every day, and on staying as strong as possible through good diet, supplements, exercise and attitude. That can be pretty hard on bad days, then I try to give myself a pep talk, or talk to a friend or family member who will buoy me up. Good luck with your treatment for MAC, if the side effects don't subside, or grow worse, get in touch with your doc. Sue

Yes defiantly do not move to avoid MAC. The bacteria that causes it is everywhere and in every home. Mostly only people with a low immune system or other lung problems will develop MAC. My doctor is still trying to figure out where I may have contacted it.

I do agree with all the above, but feel I must add a bit to this discussion. I also live in the central Florida area ( not far from Tampa) I have bronchiectasis, asthma, several other health issues but still cleared from MAC since 2016- thankfully. Just for the record - there is absolutely no question that living in a hot, humid environment puts me at a much greater risk for exacerbations. It is a constant struggle to stay healthy here. I go to Colorado and North Georgia as often as is possible. I am careful wherever I am because it is true that you can get MAC anywhere, but it is easier to build up a resistance and maintain a stronger “defense” in better climates than here. I wish it wasn’t like that - all my children live closer to my home in Florida. I am strongly contemplating a move. I am trapped indoors with dehumidifiers, air cleaning devices, double the amount of airway clearance and pulmonary therapy, etc., etc. Just sayin’ ... Don’t rule moving out as a viable consideration

@america Oh Rita, I am sorry your news was not good. I hope that your pseudomonas goes away as quickly and easily as mine did. Hang in there Rita, conquering mac takes a long time. Sending you a BIG cyber hug !