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I would love to add to this discussion or chat with either of you. I was diagnosed with this disease in 2008. I was on 3200mlg of high powered antibiotics for a year. I recovered completely. I am having some issues now and wondering how each of you are doing.

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Replies to "I would love to add to this discussion or chat with either of you. I was..."

Hi I was just wondering if you are still Mac free, and what antibiotics & amounts worked for you? Do you now take any precautions to avoid getting reinfected like boiling drinking water?

I thought I recovered and after 6 months its back. How are you doing?

How are you doing Heather. I have MAC as well. I thought I was cured but after six months I am going to a new doctor. Yuck. I feel very tired most days. I want to find somewhere to go that I can be cured. I want to live a wonderful life. How are you doing?

Hi and welcome @donut I am doing ok, been on the 3 meds for nealy 2 years but was put on them 3x week(18mths) rather than daily(I have cavities) which I am now on along with Amakacin inhaled, have a ct scan next month. How long were you on the 3 meds before they said you were MAC free, and did you stay on the meds for a further 12 months?

I was on the big 3 for 18 months. I just I wasn’t on it long enough I guess. Are you doing ok?

@heathert, Heather, thank you for jumping to support a new comer! Hugs! Katherine

Hi @donut , I am doing ok. Yes it seems 12 months of treatment after clear sputums doesnt seem to be long enough to keep it away maby they need to up the meds to 2 years after 3 clear sputums? I havnt heard of that happening yet but if they can get rid of some of the MAC with time they should be able to rid us of all of it.

I had a cold in October and it seemed to settle into my lungs. I still have some mucus, so asked my pulmonologist for advice. He said if I am still coughing we could try an inhaler such as QVAR 80, 2 puffs 2 x day for about 2 weeks. If no better, get a chest xray.

Do you have any experience with this inhaler?

@jcarr, (do you have a first name .. more personal!) FIRST question: have you been diagnosed with MAC.

Secondly, yes, I have been using Qvar for quite a long time .. it helps me a LOT in coughing up the mucus from my lungs! BUT I know it is important if you use it to use good inhaler hygiene .. my personal recommendation from my File Cabinet is .. hope you find it helpful! Hugs! Katherine

BUT after some thoughts I realized some things I have been doing wrong and this is my new routine:
1. using inhalers PRIOR to brushing my teeth (had been using after)
2. use an Aerobika device . Use a “huff” cough, (like you were cleaning your glasses and fog them with your breath only more forceful), along with the Aerobika, you can pull mucous out of those lower airways.
3. using peroxide to dampen my toothbrush with toothpaste to brush (purchased a squirt dispenser)
4. using peroxide after brushing for toothbrush storage for sterilizing
I think this routine will help oral thrush by keeping my Sonicare toothbrush sanitized daily. http://www.good-gums.com/sanitizing-your-toothbrush.cfm

@donut, Donna, a question I have been pondering .. DID they stop your antibiotic treatment AFTER negative sputum cultures for TWELVE months which is standard procedure? What was the criteria for stopping your treatment .. what reason did they give you? Also .. what type of doctor were you being treated by? An Infectious Disease doctor who treated other MAC patients? Just wondering? Hugs! Katherine