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Replies to "Rick I noticed here that you are quite interested in the subject of MAC and infections..."
I, like many others, hope for a miracle cure or at least something that can make us breath better and improve our quality of life. With MAC, I've was on the big 3 + Amikacin + Arikayce for 40 months then only to be diagnosed after with aspergillus with Voriconazole for the last 14+ months. My aspergillus initial symptom was Haemoptysis so I was at the pulminologist pretty darn quick. Most of my diagnoses have come from the numerous CT, VQ, PET scans I have had due to nodules and cavitation.
I've only only caught 3 illnesses last 6 years. MAC pneumonia, aspergillus and recently a bad case of covid. I've not even had a sniffle during this period. I thought I was immune to covid until 3 months ago.
Not Rick, but here is what I have learned from the nurses and lab tech among my family & friends. Our cultures - whether nasal, throat, mouth or sputum, are full of "bugs" - very few of them rise to the standard of needing treatment.
For example, in the assisted living facility where my daughter was a case manager, 90% of her residents grew MRSA (staph) from nasal cultures, but only 2 had treatable infections - one in an arm wound and another in a diabetic foot sore.
My other daughter, formerly an RN in a county jail, said her residents were "teeming" with HIV, hepatitis, TB, MRSA, C. diff, e. coli and a lot of things you would NEVER want to catch - yet only acute infections were ever treated. She said "They come in this way, and we only treat acute or contagious stuff. With many of their lifestyles, it has been shown they won't stay on any long term antibiotics, so if we treat them short-term, the bugs just get more antibiotic resistant over time."
And one of my last sputum cultures showed "inconsequential findings of pseudomonas putida, chlamydia and e. coli" - none were treated, and as far as I know, it's possibly still there, even though I don't feel ill.
And there are new protocols in use in pediatrics where mild ear and throat infections are watched and allowed to heal naturally if possible - partly because compliances is spotty, and partly so less-lethal bugs don't develop into antibiotic-resistant "superbugs".
ID docs and researchers are constantly trying to figure out the answer to your question, "How do you even know when to let the doctors know that you have symptoms and if you have multiple bugs; how do they know what to treat?"
Sue
PS Did you know that up to 1/2 of MAC infections clear "spontaneously" - that is medical speak for "untreated by antibiotics". I often wonder if they consider an infection rigorously fought with 7% saline, airway clearance, diet and exercise to be a "spontaneous cure"?