1. < MAC & Bronchiectasis

Natural remedies for MAC

Posted by med08 @med08, Sep 30, 2022

Some have posted they use Chinese herbs and acupuncture to help with MAC. Which herbs and what part of body do you get acupuncture and for what specifically?

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malambrit | @malambrit | 5 hours ago
In reply to @lilianna "Malambrit, do you still go to Mayo and do you have an assigned doctor there? I..." + (show)
@lilianna

Malambrit, do you still go to Mayo and do you have an assigned doctor there? I think usually after 6 months not converting, the doctors add or change meds. I would suggest contact Mayo through email, if they gave you your medications and ask how to proceed. I don’t know what state you live in so also look around in your state or around. I know it’s frustrating, not easy when you are tired, and wish your day ended at 6pm and you could sleep, if you can.

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I went to the Mayo almost a year after diagnosis and had already been on the meds. I met with Dr Baig 1st via zoom. He scheduled a full day of test at the campus and I then had another appt via zoom with him and Dr Bosh, IDD. They recommended I also have local care. It is crazy that here locally, there is such a shortage of Pulmonary care. I live in Crestview, FL. I tried to send a message through my portal, but plan on calling tomorrow to get scheduled back with Dr Baig. Thank you so much for the response!

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blm1007blm1007 | @blm1007blm1007 | 2 hours ago
In reply to @malambrit "Hi Barbara, Thank you for the detailed reply. I am not familiar with MAI. I replaced..." + (show)
@malambrit

Hi Barbara, Thank you for the detailed reply. I am not familiar with MAI. I replaced my very old hot water heater. I don't wear a mask but wet down the soil before working in the garden. The 90/10 is I eat clean 90%. I don't eat processed foods except for very clean protein powder, protein bars. I make sourdough bread and it is white flour, I eat a slice most every day and I have a glass of wine most every night. I have a fairly new shower head but need to do better with cleaning / replacing. I have shortened my showers dramatically which pains me, my shower ritual was a great relaxer for me, an escape of sorts. Like you, I don't really have any symptoms, if I hadn't coughed up blood I would likely never been diagnosed. I really thought after a year of meds, I would have cleared. Thank you again, I pray for your continued strength.

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I understand about the shower ritual.
Homemade sourdough bread. nice and yummy. Then there is Sue who makes her own yogurt. I am making my own hummus in between everything else one has to do to eat healthy and yet want it all to be enjoyable.
Sorry to hear you had an episode with coughing up blood. I have my fingers crossed that I don't see red with my continued BE and MAI...Macrobacterium Avium Complex Intercellular infection.
Wishing you a good planting season ahead...coming soon, if not some already.
Barbara

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malambrit | @malambrit | 1 hour ago
In reply to @kwi "I think what malambrit means by 90/10 is that she eats clean and healthy 90% of..." + (show)
@kwi

I think what malambrit means by 90/10 is that she eats clean and healthy 90% of the time which is remarkable feat. I wish I could say the same about myself.
When I was first diagnosed, my pulmonologist insisted on airway clearance and she sent me to an ID doctor. Both were not specialists in MAC and both wanted me to start antibiotics right away even though I was not symptomatic. The pulmonologist did not do a good job of explaining why I needed to do airway clearance as I was not bringing up anything and I did not feel I had anything to bring up. I complained about having to do the AC to the ID doctor who then said he didn’t think it did anything anyway and as far as he was concerned I didn’t need to do it. Thankfully I didn’t fully abandon airway clearance and stopped going to that ID doctor and made an appointment at NJH. People on this forum helped me realize how important nebulizing 7% saline and airway clearance is to do every day.

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I still can't wrap my head around the fact that there aren't more doctors that know about this disease and how to guide us. How I could go almost year without knowing about airway clearance and I found out by self advocating. Through many google searches, I found Linda Cooper Esposito, Be Clear. I scheduled a zoom call with her and she was a treasure box of information. That is how I knew to call The Mayo. I understand National Jewish is also gold standard. I love Colorado, climbed Mt Elbert, a 14er, to get married:) My career is a 6 day a week gig and would be very difficult for me to make regular treks for appointments. I was extremely impressed with The Mayo and hope I can continue with follow ups there.
Best,

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