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Salt Rooms for MAC

MAC & Bronchiectasis | Last Active: Aug 25, 2021 | Replies (27)

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@hydrang3a

@heathert......in addition to Arikayce were you on antibiotics for a year or more? And to everyone else out there......is anyone else concerned about the long term damage we are doing to our bodies by taking the big 3 for 18 months? In addition to damaging eyes and ears these dugs especially long term affect our memory, our emotions and our psychological well-being not to mention other more frightening side effects. Our culture has long been heavy handed in dispensing antibiotics and studies have shown that people live longer healthier lives in areas where antibiotics are not prescribed. I know Azithromycin, Ethanbutol and Rifampin is the recipe favored by Mayo and NJH but many progressive doctors are beginning to question the use of these drugs. I want to believe that what I’m taking is absolutely necessary in getting rid of MAC and not something that is consistently prescribed to keep the medical and pharmaceutical companies afloat. It’s been said that doctors and pharmacies love chronic illness as we continue to pay for years .....I’d hope that they love us instead for their desire to cure us. Let’s hope the Hippocratic oath is their top priority.

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Replies to "@heathert......in addition to Arikayce were you on antibiotics for a year or more? And to everyone..."

Yes I get concerned about the medication. Do I think for one second that Drs love us being ill and are prescribing medications to make money.... no and find that a bit offensive. What I don’t understand Is people going to Medical Doctors and being surprised that they are prescribed medications. We have the choice to decide for ourselves if we want traditional medicine, holistic, or combination. Medical professional follow specific scientific model.... Is it the best treatment for everyone, no it isn’t. In fact, I’m having to make the decision to go back on the meds or not... due to side effects. But that’s my choice and we all just do the best we can. I wish this disease had one cure and it was instant. Unfortunately it, along with many illnesses don’t. I’m thankful their are MDs that are willing to work 80 hours a week to try to help. Some may be in it for money as you said you have heard, but being married to one, I know he wants nothing more than for his patients to have a good response and would never “ love” for his pts to be sick so that he makes $. Choose Western Med, Eastern, Holistic, or no treatment at all.... that’s on each of us.

I didn't have to think too hard about starting the meds - my MAC was so bad by the time it was diagnosed that I was basically existing to cough until my abs hurt and I couldn't talk. (MAC treatment was preceded by 4 courses of treatment for pseudomonas, which I also had.) I had no energy and spent my days on the couch. If there is long-term damage, I will just deal with it - at least now, after several months, I am beginning to live a somewhat "normal" life again. Yes, I have bad days, and some of the side effects are unpleasant, but the cough is far less, and I can carry on a conversation without hacking in someone's face. I am extremely vigilant about following the advice I was given - probiotics, no alcohol (to avoid further taxing liver), avoiding respiratory infection & limiting exposure to sick people, frequent rechecks of eyes, hearing and liver/kidney function. My poor pulmonologist was nearly in tears as he delivered the news that I had to begin treatment because he is so concerned about his patients' well-being - I know his office hours, and I often receive callbacks, or just status checks from him or his nurse at 6:30 or 7:00pm. I certainly am not worried about my doc, clinic, pharmacy or "big pharma" getting rich off the prescriptions. Most of those prescribed for MAC & pseudomonas, except Arikayce and Tobramycin, are off-patent and generic.

@hydrang3a My Mayo dr does not favor the traditional Big 3. He thinks they are over-prescribed. You can click on my picture and read my bio and see how I was treated. I am concerned that drs are not keeping current and giving patients other options to choose from. I think every one of us should ask our treating physician what their success rate is in using the Big 3. I bet they would say "What do you consider success?" or another answer might even be. "I don't know".