1. < MAC & Bronchiectasis

Anyone doing "watchful waiting" with ACTs but no antibiotics?

Posted by loreofox80 @loreofox80, 1 day ago

I am soon to be 81, in marginally good health, but am pretty sure the 3 antibiotics will make the remaining quality of my life very unacceptable. So at this time, I am trying all of the ACTs treatment options but not the Big 3 antibiotics. Anyone else doing the "watchful waiting" w/o the antibiotics. I would appreciate any suggestions or comments. Thank you very much!

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kate2025 | @kate2025 | 17 hours ago

Hi. I was just diagnosed with mild BE. Did a sputum test last year for MAC it was negative but new pulmanologist I saw at medical research hospital wants to do another sputum test. I guess he suspects MAC. I'm really worried. Been reading about the treatment and wait and see as well. I use aerobika and he just prescribed adding the 7% sodium solution to nebulizer. Just got the prescription. Will start today. No real symptoms except mucus clearing (a little) but can get a lot more if get sick. Reoccurring pneumonia since 2020 (4x's) but didn't get in February when I had flu A or in May with a bad chest cold. Praise the Lord. Most recent (June) showed pretty good bloodwork with high sensitivity C-reactive protein at .32 I was amazed at that level. As high as 65 when I first tested a year ago. I also see a holistic/integrative physician clinic. That has helped clean up my gut. Been through mold detox through the clinic as I tested for a mold toxin (aspergillus) had house treated, cleaned the vents, put on a uv lamp on hvac and installed a larger 5" filter box. (Helped a lot with allergies at the very least). Getting retested for mold toxins as well.
Really praying test for MAC will still be negative!

REPLY
1 reply
blm1007blm1007 | @blm1007blm1007 | 17 hours ago

@loreofox80 I was diagnosed in August of 2022 after having lost 35 pounds. My primary care doctor finally realized, after my many visits of telling him something is wrong, that I needed testing. CT Scan showed BE.
I was started with "watchful waiting" after my visit to NJH and with NJH finding MAI...which is a bacteria under the "umbrella" of MAC.
I suffered many months with what to do...antibiotics or no antibiotics. I decided against them. I am now 82 and 9 months into life. I have not had an exacerbation and feel well...no fatigue etc.
I believe I have had the infection since at least 2018 due to what I was brining up every once in a while. Therefore as I tell others I am living with an infection in my lungs but feel fine.
Hopefully the next few years will continue to be the same for me...feeling fine. To me the Eczema is my worse problem that also was diagnosed in 2022.
Hope all replies have helped you as they did for me during my period of "what to do".
Barbara

REPLY
loreofox80 | @loreofox80 | 8 hours ago
In reply to @kate2025 "Hi. I was just diagnosed with mild BE. Did a sputum test last year for MAC..." + (show)
@kate2025

Hi. I was just diagnosed with mild BE. Did a sputum test last year for MAC it was negative but new pulmanologist I saw at medical research hospital wants to do another sputum test. I guess he suspects MAC. I'm really worried. Been reading about the treatment and wait and see as well. I use aerobika and he just prescribed adding the 7% sodium solution to nebulizer. Just got the prescription. Will start today. No real symptoms except mucus clearing (a little) but can get a lot more if get sick. Reoccurring pneumonia since 2020 (4x's) but didn't get in February when I had flu A or in May with a bad chest cold. Praise the Lord. Most recent (June) showed pretty good bloodwork with high sensitivity C-reactive protein at .32 I was amazed at that level. As high as 65 when I first tested a year ago. I also see a holistic/integrative physician clinic. That has helped clean up my gut. Been through mold detox through the clinic as I tested for a mold toxin (aspergillus) had house treated, cleaned the vents, put on a uv lamp on hvac and installed a larger 5" filter box. (Helped a lot with allergies at the very least). Getting retested for mold toxins as well.
Really praying test for MAC will still be negative!

Jump to this post

Egads! That is basket full to deal with! I will certainly send out negative MAC vibes for you. Let the community know what the test result was. We all share what you are going through. Lots of inflammation too. Good luck! Nancy

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loreofox80 | @loreofox80 | 7 hours ago
In reply to @sheila9 "I was diagnosed with bronchiectasis in 2016, but believe I had it for quite a few..." + (show)
@sheila9

I was diagnosed with bronchiectasis in 2016, but believe I had it for quite a few years. Diagnosed with MAI in 2016 by bronchoscopy. My last 2 CT scans showed no new nodules and waning existing nodules. I feel good for the most part and have a few exacerbations that did not require hospitalizations and recovered. I decided against the antibiotics for the same reasons as others. I am sensitive to drugs and really didn't feel I was there yet. Been nabbing with saline for 9 years. First 3% and last 2 months 7%. Doing airway clearance with postural drainage and breathing techniques. Could not use the Smart Vest. I do have a healthy diet and have been spending more time in cooler climates as I feel much better.
So far so good and wishing us all successful journeys. Oh yeah, I am 75 and also have hymoptysis.

Jump to this post

Thank you very much! Sounds like you are in a good place. May it continue on for a long, long time. I am curious why you couldn't use the Smart Vest. My insurance turned me down. Sort of saying I wasn't yet sick enough and other strategies hadn't failed enough. It couldn't possibly have been that they didn't want to spend the $12,000???? Thanks again. Nancy

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