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Posts (18)

Sep 20, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

If you positively have MAC, the only treatment is antibiotics. I would not hesitate because it will only get worse not better. There may be remedies that make you feel better but believe me, no other cure. The antibiotics are not that bad. I had no side effects at all and I’ve been taking them for 7 years (except rifampin). I also had tree in bud and nodules. If the broncho is negative for MAC, then you’re probably OK and don’t need anything.

Sep 20, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I had a bronchoscopy done in the hospital. They can do a sputum test but it’s not as accurate. I think if the sputum test is positive for MAC that’s all they need but if it negative, they like to make sure with a bronchoscopy.

Sep 17, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

i think Clarithromycin in in the same family as the other “romycins”

Sep 17, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year

Sep 16, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

i’m not with kaiser but my parents are and some doctor they like and others they don’t. They simply request another Dr. until they find one they are happy with. Don’t be afraid to ask for another pulmonologist. We are in the Los Angeles area but the same policy should apply. I would learn all you can so that you can ask all the questions you need. I also was diagnosed with MAC in 2009. I also could not handle rimfampin so i only took the other 2 (cyrithermyacin and ethembutol) I have been negative to MAC for 1.5 yrs so I’ve been taken off all antibiotics. it’s been a month so far and I feel fine, except I have bronchietasis. This is a long process but your husband will get through it and learn to manage the broncheitasis. Make sure he gets a flu, and pnemonia shot, try and avoid catching colds, don’t wear yourself out, take immune boosting vitamins. Ask for CT scan at least 1 a yr.

Aug 22, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

TAKE THE MEDS.You will not get better without them, only worse. You’re just prolonging your recovery. At least see how they effect you before you make a decision. You’ll feel better shortly.

Aug 21, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi @heathert,
I’ve been clear from MAC for about 18 months. I think the Doc. is going to take me off meds this week. I went off 3 years ago and then it came back, hope this time it works. Last time I wasn’t clear for as long. My Doc. feels it better to go off if things look good than to be on antibiotics for ever. The nodules have gotten smaller, although they say they usually don’t go away for good. I have never become immune to the drugs.( diagnosed 2010) I had a sensitivity test last year, so it’s good to know they still work. I had a recent CT scan last month so I’ll go over it with my Dr. on Thursday. I’ll keep you posted.

Aug 20, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

The only drug I could not tolerate was Rafampin. I got a rash and felt dizzy. The other two, ethembutol and clorithromyacin had no side effects, especially after 6 years. I think the fear is worse than the actually negative effects. Very few people have bad side effects. Most people can tolerate them unless they have unusual allergies or often have to mix with other meds. Always take good probiotics and figure out what works best with your body. I know so many people have a love/hate relationship with antibiotics, but honestly, we’d all be really bad shape if they were never discovered.