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Treatment for MAC
I am on the verge of starting the 3 antibiotic treatment for MAC. I am interested to hear other people’s experience with this treatment. I use a 7% nebulizer treatment almost daily and walk and hike. Seems so weird to do this treatment when I feel ok, just coughing at times. Apparently if you wait until it gets worse it’s harder to treat?
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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"?
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6 ReactionsDid you have the inhaled Arikayce or the IV. I am supposed to be starting the inhaled soon and worried. But your tips are helpful.
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1 ReactionSue,
thank you so much for this strict and clear post. Yes it totally makes sense but then I get the culture back and every time there is something new there- and one side of my brain says be reasonable and the other worries. But the most important thing is that I carry on and do what I have to do and live. So thank you.
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3 ReactionsI, 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.
One of the first questions I was asked after diagnosis was if I had chickens or birds. I grew up in the country and had many types of birds . The fact that potting soil is a source blew me away because I work in my flowers all year.Now I'll need to be more careful with it.
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1 ReactionThe potting soil issue is a biggie for me - my life is filled with plants and gardens.
On the subject of gardening, my ID doc's advice was "Be Smart" - Wet down any soil, in pots or on the ground before working with it. Wear gloves. Mask up if there is dust. Stay away from peat moss - apparently a huge breeding ground. And leave the garden clothes and shoes in the garage so you don't bring extra contaminants into the house. I also throw mine in the wash every 2-3 days now instead of leaving them on a chair in the bedroom and re-wearing until the garden jeans could stand up by themselves!
Go ahead and enjoy your gardens.
Sue
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2 ReactionsThank you, that is so encouraging
I was diagnosed with MAC 1 1/2 years ago but have had respiratory issues as long as I can remember. We had both chickens and pigeons when I was a child and my job in the garden was helping to pull the weeds. Interesting to hear how all this may fit together. Prayers to all.
Amen to that! So many people have had similar childhood experiences or even lifelong but never contracted MAC so for us I think those kinds of experiences become a catalyst for susceptible people based on genetics and body type. I had a doctor look at me once and say I was “textbook “ for MAC based on Lady Windermere - referencing a book character. As a kid I was an outdoorsy type and my brother was a bookworm. He was recently diagnosed with lung cancer but was an avid gardner as an adult. He probably pulled weeds, but he also grew and smoked his own weed! All that gives us food for thought - living in a bubble would be no fun at all! Irene5
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2 ReactionsSue, the doctors statement to you.... "Stay away from peat moss".....,reminded me of another of my thoughts to myself, regading peat moss and the cleaning of leaves.
I posted earleir what I said to myself after cleaning out a bird house. I said: 'That was bad, you just breathed in dust.'"
Within the last several years before the doctor realized and apparently said to himself due to his ordering a C Scan: "Yes this woman does have a problem as she has been coming in and telling me for the last few years" (C Scan of 8/22 that found BE.), I said the same thing to myself after breathing in 'dust' while working with peat moss.
However, I also cleaned up leaves with a blower behind the Crape Myrtle tress in the early Spring of 2021 and thought afterwards: "You didn''t think to wear a Mask."
So there I was again in the landscape with dry decayed matter that probably had some really bad stuff in it. No mask. Sad that I knew it wasn't a good thing but didn't think of Masks any time before our concern with Covid and how a Mask would be best in doing all the garden tasks etc.....and of course at that time didn't know how dealing with certain garden/yard tasks are as serious to our health and well being nor did I know of BE......but.....in my heart of hearts I knew what happened, the breathing in of landscape material/particles and dust wasn't a good thing.
Masks and caution are so important....sometimes we take too much for granted when feeling good, strong and healthy. Now I wear a mask most of the time I am out in public to avoid all other types of nasty health problems and as well wear a mask when needed when working in the landscape. Another learning....learned too late...BE etc. etc.
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