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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
In 2014, I was diagnosed with Asthma/COPD and bronchiectasis. I got sick the winter of 2016-2017 in Arizona. When my Dr did tests (sputum sample, CT scan, MRI)....... he told me I got Psuedomonas & Mycobacterial Avium Complex. Since then I've been in the hospital on 2 different IV antibiotics for a duration of 2 weeks, for 13 different times for the flareup of pseudomonas.....Just recently March and May of this year. I try to expel the mucus two or three times a day with saline nebulizers and aerobika that I blow into.) I'm on Levabuterol & budesonite nebulizers 6 times a day and some medication too keep the Pseudomonis from flaring up so often.
I've been on the different antibiotics (arythomyicin, ethambutol, rifabutin, bactrim) for the MAC for more than a year. The antibiotics never helped the MAC and the side effects made me sick. When I started taking the antibiotics I was nauseous, dizzy, fatigued, unsteady, would fall, my hand would shake, just generally didn't feel well at all. I had to stop one within three months because it caused my liver numbers to drop. I had to take IV iron for several weeks to get it back to normal.....another antibiotic I had to stop caused my eye became blurry, Eye Dr said my macula had split.....(eye is still blurry).
The next antibiotics they suggested had worse side effects. So I decided not to take anything and to let the MAC
(that is suppose to be slow growing) continue without any antibiotics.
I'm just wondering if anybody out there (1. has had better luck with different antibiotics) (2. has stopped all antibiotics like I did and how long has it been) (3. and how long any patients has had MAC and still alive)....
(4.and what's the longest they'd had MAC and still doing considerably well)?
The Drs at Mayo in Phoenix Arizona and at Sanford, in South Dakota had the same diagnosis and treatments.
This has taken over my life. I can't do alot of the things I used to do...or go out much because of the coughing?
I'm struggling and any suggestions would be helpful and greatly appreciated.
Replies to "In 2014, I was diagnosed with Asthma/COPD and bronchiectasis. I got sick the winter of 2016-2017..."
So sorry to hear how you have struggled for so long.
One of the things that I heard Dr. Daily say about repeated infections is the fact that we may not have done enough in our own environment to protect ourselves and we keep going back to the same environment without making changes. Changes such as temperature of hot water tank and methods to reduce bacteria in it, cleaning or changing out our shower heads to not allow bacteria build up and other practices... etc. etc. etc. With my having researched and read on this site what would be best to do in our home enviornment and all environments we find ourselves in.... I hope I have done enough to help myself. I also hope my eating healthy and taking supplements is helping. I have a C Scan in October and will know then. Wishing for you and hoping you find your way to better outcomes....it certainly isn't an easy task for us with compromised lungs, and more than likely, other health problems added in. Barbara
Barb, when you say you are coughing a lot, we all understand - been there ourselves. Do the doctors have you doing regular airway clearance, using saline in a nebulizer to loosen the mucus, then airway clearance techniques to loosen it?
This has helped keep a lot of people in this group healthy enough to avoid antibiotic therapy, and reduced some of the constant coughing.
Here is an excellent webinar on airway clearance by Dr Pamela McShane, an expert in treating Bronchiectasis and MAC:
Is is a little long, but well worth watching. She stresses trying a variety of clearance techniques until you find what works for you.
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You mentioned taking a medication to keep the Pseudo from flaring up so often. What would that medication be? What IV antibiotics do they put you on during those 13 times? Are you able to get up much mucus when you nebulize? If not have you tried using the Aerobika while in different postures to assist drainage?