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

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@yaggie01 Hi there, and welcome to our group. I was happy to see that you have read many of our posts and are gathering your information. It is the smartest thing you can do. You will find that YOU will be your own best advocate. Are you able to navigate our site alright? Do you know about using the Discussion Board to find topics? Or entering key words in the 'search' box at the very top of this thread? I am here to help. I am glad that you are going on the Arikayce. Meds delivered straight to lungs are supposed to be better for your body. I didn't really get well after 10 yrs of being extremely sick; until I was put on inhaled tobramycin. That was my magic bullet. (Btw, I never got on the Big 3). Will you please stay connected with us and report back how you do on the Arikayce? Thnx!

@sueinmn I can relate to you so well, I would forget to eat too, I would find my dinner in the microwave the next day and wouldnt have known I diddnt eat it, no apetite at all, no memory about anything,diddnt want to go out, time would disappear(3 weeks would seem like a few days) got down to 103lb and diddnt look in the mirror until one day I saw myself get out the bath and freaked out. It was anxiety and lots of us on here have had it over MAC. I got some meds and some high cal drinks from the dr which helped even though I still had bad MAC but put the weight back on, dont know if this is you or not but if so it may not be the MAC or meds. (hope I havnt told you this before) Take care Heather

@windwalker yes, I will be glad to let you know how it goes if I go that route. I live in Kentucky close to the Tennessee line. My pulmonary doc suggested he would refer me if I want a second look. I know you go to Mayo Clinic in Jacksonville and could you tell me who you see? Jacksonville is about 10 hours from us and would probably be the closest of all the clinics I see mentioned in this group. Thanks in advance for sharing the info.
Take care, Yaggi01

@windwalker ...I respectfully disagree with your statement “once you have Bronchiectasis there is no going off antibiotics”. Although Bronchiectasis is a lifelong condition....many people with Bronchiectasis live healthy antibiotic free lives. Bronchiectasis is not an infection and if it is treated as one your body will become immune to the antibiotics and result in ineffective applications for later infections....... . In addition antibiotics wrack havoc with your entire body killing off important life giving cells in your eyes, ears, brain, and digestive system...virtually every organ in your body. It’s bad enough we have to endure the side effects of 18-24 month MAC antibiotic regimens.....we don’t need to suggest people take antibiotics indefinitely. Life long antibiotic use for those void of infections in the opinion of most physicians does more harm than good.

Thanks Terri, I had my last sputum test Christmas week, results are not back yet as it was sent to our state health dept by the clinic, and they are slow to report. My doc is able to check interim results on line, and does so very frequently. Last time I had pseudomonas, he called me after 7 days, but when it was finally negative, it was 3 weeks to confirm...Approaching that so I expect to hear from him shortly. Because I am small, he felt in December that my weight was "still within normal range", but I have lost 20 pounds in 16 months, and definitely feel puny, plus even with effort I am not maintaining physical strength. If this is my new normal, I don't like it. Seeing my regular doc this week, and will see what she thinks about the loss.

@yaggi01 I don’t know which part of the Tennessee line of Kentucky you are near, but when we lived in Tennessee (Clarksville) I was seen at Vanderbilt and thought the ID doctor I saw there was thorough, knowledgeable, and kind. I’m sure the Mayo in Jacksonville is exemplary as well. (irene5)

Hello - I have a question about taking "Clear Lungs". I would like to try it. Can anyone tell me the brand they take, if it is liquid or in pill form, how much, how often, etc. I was told there were several companies so I wanted to be sure to use the brand that some of you say has been quite effective. Thanks, Pam

@hydrang3a I agree with you about bronchiectasis and antibiotics. I'm an example of living a normal life with bronchiectasis but without antibiotics. It is true that, since bronchiectasis has no cure, those of us who have it will always be vulnerable to being infected with MAC. But I don't think antibiotics can be safely used long-term simply to prevent MAC from happening. And I don't believe the doctors would even be willing to prescribe antibiotics if you are not yet infected with MAC or your infection is not progressing enough to affect your daily living. There are just too many cons with using antibiotics long term.

@sueinmn Thanks so much for replying Sue, your advice was very helpful to me. I hope you can get your weight under control very soon. Yes agree with others -- have read in research literature that when the fight against the bugs succeeds, symptoms like the weight loss will slow or stop. My weight loss has been much smaller so far, but when I had a bad illness when young a specialist put me on glasses of sweetened condensed milk, or powdered milk with sugar, every day to help avoid losing too much weight. Healthier versions of this might use full cream milk topped up with cream and sweetened. And have plenty of honey every day. (Honey was historically used for lessening TB symptoms. You could also add a good Probiotic powder to the milk - that can help reduce the gut effects of taking antibiotics if you have it 12 hours before or after them).