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Radiation Lung Fibrosis, Bronchiectasis, Traction Bronchiectasis
MAC & Bronchiectasis | Last Active: Mar 27, 2022 | Replies (33)Comment receiving replies
I would recommend Mayo Clinic in Jacksonville. They are the ones that diagnosed me with MAC and bronchiectusis. I was getting sick with bronchitis and pneumonia frequently, but my Doctors in the Chicago suburbs or Naples FL never mentioned that I may have these issues. I was really shocked to find out that there was a named disease for this issue. But, I have been resisting the drug treatments because all of the antibiotics can't be doing your body any good. All the pulmonologists seem to be recommending, and trained to prescribe the 3-4 antibiotics a day program for a year or 18 months. I have several good friends that have been on the program and it was not helpful to them. It doesn't get rid of any issues, you just have to keep using the drugs for the rest of your life. Other friends, have had major side effects, some not even being able to tolerate the drugs. There has to be a better solution!
Replies to "I would recommend Mayo Clinic in Jacksonville. They are the ones that diagnosed me with MAC..."
If you do some reading on other discussion in this group, you will find that many of us have found an alternative method of keeping MAC either at bay or out of our lungs. Here is the process in a nutshell:
Airway opening - either via inhaled or nebulized bronchodilator
Airway cleaning - using nebulized 7% saline solution
Airway clearance - huff coughing, a positive airway pressure device like Aerobika or Acapella, a percussion vest, or manual percussion sometimes including postural drainage
Some people use N-acetyl-cystine or glutathione, Omega-3 or other supplements
Quickly responding to the first hint of a respiratory illness, in consultation with docs
Periodic monitoring of lungs via CT and/or sputum cultures.
This is needed once or twice daily depending on the severity of one's Bronchiectasis. It sounds daunting but my regimen takes 20-30 minutes in the morning, while I read the paper and my email. I add a second session if my lungs are acting up.
7% saline is used in the neb because it has been shown to halt the growth of MAC bacteria.
This regimen has kept me completely off antibiotics for 22 months. My latest CT showed no change in my lungs since 2019.
Sue
Pal, you said “ But, I have been resisting the drug treatments because all of the antibiotics can't be doing your body any good.”
You’re wise to minimize use of antibiotics as they “take no prisoners” when turned loose in ones’ gut, killing the good along with the bad. Thing is though we occasionally find ourselves in a predicament where the “tradeoff” seems worth it.
One thing that suffers during the onslaught is one’s GUT MICROBIOTA. One thing we can do to minimize the damage is increase our intake of fermented foods which tend to be heavy with “gut-friendly” microbes.
Unpasteurized sauerkraut or Kimchi will likely do the trick. Available at the refrigerator case in “Foodie” friendly grocers…or better yet, make it yourself. Let me know if you’re ready and I will tell you how I do it. Don
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thank you . This info is helpful. I too had the bronchiectasis for several years before I was diagnosed.
Apparently the doctors knew but they did not tell me. I changed primary doc and pulmonologist.