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14 hours ago · Shower heads? in MAC & Bronchiectasis

I think there is no definitive answer on this issue. A study by NIH shows NTM can form a biofilm in PVC pipes which is not dissipated by drying out. Another study of biofilm suggests it cannot be "rinsed away" by flushing pipes. There is research that suggests that copper pipe doesn't have the same problem. If NTM (MAC/MAI) is present in water it may aerosolize. Some suggest this as a possible vector of infection. But, if the NTM forms a biofilm in your pipes, no kind of shower head or cleaning of the head will eliminate it. To suggest otherwise is not supported by research. I would be cautious about succumbing to a sales pitch, thinking it was somehow keeping me safe. I minimize time in the shower and we set the water heater to 140F to inhibit growth.

4 days ago · health at diagnosis in MAC & Bronchiectasis

Taking clarithromycin, rifampin and ethambutol. Cough and chest pain gone. Sputum samples in December came back mixed, one clear, the other with minimal MAC. Bloodwork, eye and hearing tests are all OK. Side effects are manageable. Followup CT and all other tests scheduled in April, so I'm hoping things still improving.

5 days ago · health at diagnosis in MAC & Bronchiectasis

@ann0616 Hi Ann –
Everyone on this site has had a different experience, and is ill or well to a different degree. Here is my story
I was diagnosed due to a severe lingering case of pneumonia & cough that were originally treated as uncontrolled asthma, a chest x-ray showed "something suspicious" and the follow-up CT confirmed bronchiectasis & showed spots. The sputum cultures (taken by me as you described) showed first pseudomonas, then MAC. Based on how long I was ill, this had probably been growing for about 2 years – I was basically existing on the sofa, and coughing all day & night for over 6 months.
My daughter (under 40) was suffering from repeated sinus infections & intractable asthma exacerbations – when her docs heard about her Dad & me both having bronchiectasis, she was tested & also has it. (So did my Mom, and I have a brother with it.) She is otherwise healthy & strong – a fitness & adventure "junkie" – but all her life, a simple cold has been a gateway to weeks, if not months, of coughing & illness. Which describes both Mom & me to a T. My husband is asymptomatic & feels fine as long as he uses his long-acting inhaler. The doc believes his bronch is from rheumatoid arthritis. Our University is now studying her & will be looking at the rest of us, trying to find a genetic link.
I am heading into month 8 of the "big 3" antibiotics, and other than side effects from those and fatigue, and periodic shortness of breath, feel fine much of the time. As soon as I get the "elephant on my chest" feeling, I step up my breathing treatments & try to get extra rest. Based on my Mom's experience, I expect this will gradually get worse, but she lived to 84 and died of something else, so I just keep "living my life."

5 days ago · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@jkiemen Hi Jo Ann – I looked – the nearest site for you would be Ann Arbor Michigan.I'm guessing that is about 350 miles for you?

Sun, Mar 10 1:47pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@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

Sat, Mar 9 8:47am · MAC symptoms in MAC & Bronchiectasis

@lorenaa Major surgery is scary enough without fear of being so sick. Please talk to your anesthesiologist well before surgery. I reacted terribly to anesthesia the first few times I had surgery many years ago – ended up in hospital for 3 days for an out-patient procedure one time. Then I got a newly trained doc from University, and she was appalled – said there are too many ways to treat the nausea for anyone to need to suffer. Now I receive an anti-nausea "cocktail" by IV before anesthesia plus an anti-nausea patch, and additional meds after the surgery as needed. I have had many surgeries since then with NO nausea. My daughter has a similar issue, just had a C-section, and did just fine.

Sat, Mar 9 8:38am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@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.