Hello! This is my first time to write/join this forum. I'm excited to find other comments about Mycobacterium Avium and the treatment. I was diagnosed with MAC after a year of symptoms: coughing, fever, fatigue – bronchitis and pneumonia type symptoms. Every 6 weeks or so, the symptoms would be so bad that I was bed ridden for 3-4 days. My doctors originally did a CT Scan and a PET scan and sent me to MD Anderson for a lung biopsy – suspecting lung cancer due to the lesions in my lungs. It took over 3 months to diagnose MAC – and then only when MDACC did a bronchioscopy and sent the lavage results to MAYO Clinic to diagnose. Needless to say – having MAC was a much better diagnosis than having lung cancer – so my family and I celebrated!
Originally, the doctors tried to treat me with a twice daily breathing treatment of albuteral and sodium chloride. I am still doing this treatment twice a day, which takes about 30 minutes each session. When the next two CT scans showed that the infection was moving from my left lung to my right lung also – they immediately started me on the antibiotic regimen – 3 antibiotics (same big 3) three times a week. I have been on this treatment for 3 1/2 months now. In the beginning, I felt horrible, but quickly learned that I needed to take my meds at night – between 9:00 and 10:00 pm; after I had a light dinner before 7:00 pm. I also take probiotics (the refrigerated pill option offered by Walgreens. They keep it in the refrigerated section of the pharmacy, so ask your pharmacist for it specifically) on the opposite days that I take the antibiotics. Not sure that this helps, but I know that it doesn't hurt! The first month or so; I lost weight; but have held steady ever since. Also – although I love salads; vegetables; etc – I try to maintain a diet that contains very little of these ONLY on the days that I take my meds. I have found that I feel better with less ruffage; fruits and veges on these days. I make sure to eat them on the days "off" the meds.
What I have found is that the key to making it through this antibiotic regimen is water, water, water. DRINK TONS OF WATER! I try to drink between 80 and 100 ounces of water per day. My infectious disease doctor and my pulmonologist told me this from the beginning and I believe it has helped me cope so much better!
My last CT scans showed that the antibiotic treatment is working and my lungs are improving! Originally – my doctors said that I might be on the antibiotics for 18-24 months. They gave me hope this last visit that it might be shorter than that! My coughing symptoms have really improved; and so has my feeling of extreme fatigue! In addition – I have not been "sick" (fever, etc.) since October 1st – which is over 3 months ago and that is a good sign!
I was wondering if anyone on this forum has had a problem with their eyesight due to the ethambutal?
I'm hopeful for all who are being treated for this disease and grateful for the comments on this forum. It is comforting knowing that you are not alone!