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Long term antibiotic success question???

MAC & Bronchiectasis | Last Active: Sep 8, 2023 | Replies (10)

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@mdf

I have not had any of those experiences you mentioned to qualify for an answer to your question, and I would say that the population who frequent this forum for the most part have not either. I know if I were completely well, I wouldn't spend nearly the amount of time on here. So, whatever answers you get on this forum to those questions, they will be most likely skewed toward meds not working for whatever reason for those individuals. Sure there are some here with success stories who just want to give back, but the average Joe who has been successful is most likely out living his or her life (with a lifetime commitment to airway clearance.) To make such decisions based on real data, I would think you would be better off to get data from a population of people who represent both those who have had success as well as those who are still searching. Short of a clinical trial or something of that nature, I would think a doctor who treats MAC frequently would be your best bet to get data less likely to be skewed. It sounds like you have both Dr. Daley and Dr. Eddy at NJH and Dr. Swenson in Georgia, who see countless cases and are extremely well respected docs, at your fingertips. They are they experts; the rest of us just have our stories which are largely stories of being sick with this working or that not working. If you are looking for reasons not to take the meds, then you will find it in places like this where the success rate is negatively skewed; if you are looking for actual unbiased data based on clinical experience, then, it seems to me, you are more likely to get that information from the docs at your disposal. At the end of the day, though, it has to be your decision of whether you are willing and/or able to risk the disease progressing to a point where even what is being offered now is not enough and more drastic measures becoming necessary to control a disease out of control. Whether you take meds or not, to treat MAC and bronchietasis successfully, it is a lifelong lifestyle change that you will have to embrace. We don't get to go back to where we were before we knew about it as much as everyone of us wishes we could. I think you have to ask yourself, if I don't take the meds and I get worse, say cavities form, and they want to take a part of your lung, will you be happy you didn't take the meds. Or say cavities form and are so extensive that event the option of removal of a part of your lung is no longer an option. Will you be happy you didn't take the meds? Or say, the disease progresses and your lungs collapse, will you be happy you didn't take the meds. The decisions you make today most likely will affect your outcome. Do what you can. It's all you can do.

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Replies to "I have not had any of those experiences you mentioned to qualify for an answer to..."

Yes, I see your point………makes sense!