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Mar 8, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Excellent suggestion. I will ask my physician about levalbuterol. Thank you!

Mar 6, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Sorry to hear about your palpitations. Which meds are you on?
Many of us with MAC/MAI also have asthma. When I developed palpitations it was because of Dulera , my asthma prevention inhaler. Switching asthma meds did the trick. Speak with your physician about what could be causing your palpitations.
Best wishes on your long road to wellness.

Mar 5, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hello @killelea ! Welcome to this very helpful group. I too was diagnosed with MAC as well as bronchioectasis 2 years ago. For 14 months I followed the prescribed antibiotic regimen.Three potent doses of antibiotics taken 3 times a week. I am happy to report that my last bronchoscopy and cultures all came back negative. Aside from the sequelae, which is bronchioectasis, I am able to lead a normal and active life.
Follow your prescribed treatment very carefully and tweak how you take the antibiotics to minimize your side effects. I found that by dividing the doses throughout the day and not taking the meds prior to going to bed, I was able to avoid the reflux and stomach upset, for example. But each person is different and you will find what works for you. Speak to your physician about probiotics. I was placed on VSL#3 and it was wonderful for maintaining my intestinal flora alive and well during the long haul.
Best of luck to you. There is light at the end of the tunnel!
Liliane DDS

Aug 19, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

It is interesting how this disease manifests itself in different forms for each of us. While at the same time, we seem to share many of the same conditions.
After reading all posts for the past few months, I have noticed a few characteristics we all seem to have in common: we are mostly post menopausal females, and many of us also suffer from acid reflux and asthma. These must be recognized as predisposing factors in acquiring MAC/MAI in the medical literature out there. Another pre disposing factor must be postural, like scoliosis or my own poor posture after practicing dentistry for 30+ years.
Many of you have discussed coughing and sputum production, of which I have none. No coughing at all. Ever.

Kathryn, I found it amusing that as a French teacher, you interpreted “lavage” for washing/ cleansing. As a Portuguese speaker, I completely understand what you meant! And you were right, lavage does mean rinsing the lung tissues with a biologic saline solution and then culturing all microorganisms in that solution. Unfortunately, lavage does not actually clean out our lungs. I wish!
I am happy you are finding solace in this helpful group.
Katherine, Thank you for starting and monitoring this blog!
Liliane

Aug 18, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hello Kathryn!
I am glad you have joined this very supportive forum. You say that your pulmonary scans show evidence of a possible MAC/MAI infection. There is a protocol followed by pulmonologists in order to properly diagnose and treat this disease.
My suggestion for you is to request a bronchoscopy, followed by a bacterial culture of the fluids and, if positive for Mycobacterium avium, an antibiotic sensitivity test in order to determine which drugs will be effective in your case.
I am a 59 year old dentist, with a background in microbiology, and I have been diagnosed with MAC/MAI earlier this year. I am on my fourth month taking the three recommended antibiotics, Rifampin, Clarithromycin and Ethambutol. I have noticed a decline in energy since starting my therapy. I still manage to workout daily and carry on my normal activities. You are not alone in this struggle.Here you will find good suggestions on how to best tolerate your prescribed medications and how to be a good, well informed self advocate. Best wishes to you in your journey. There is light at the end of the tunnel.
Liliane

Aug 5, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hello Kay!
I am on my fourth month of a year long antibiotic therapy for MAC. I have been advised to take 3 antibiotics on Monday, Wednesday and Friday.
Rifampin is supposed to be taken on an empty stomach. So I take it first thing in the morning, with at least 12 ounces of water.
I then divide my other two antibiotics between breakfast and lunch. My pulmonologist did not specify exactly how the doses should be administered. What I found is, if taken all at once, I suffer severe acid reflux as a result. I wait at least one hour prior to exercise after taking the medications also.
The other two antibiotics for me are Clarithromycin and Ethambutol. I divide both doses between breakfast and lunch, so that by noon I have taken my daily dose of all three without significant disruption to my daily activities. I have experienced no sleep disruptions with this routine. Lying down or bending over after taking the meds causes reflux for me. That is why I avoid taking the meds in the evening. I do take my probiotics in the evening, with dinner.
Best of luck to you in finding what works best for your regimen!
Liliane

Jul 30, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hello Cila,
I have found VSL#3 to be the best probiotic, loaded with several species of beneficial bacteria. The different species allow for replication of what your normal flora should be composed of.You will find it is kept in your pharmacist’s refrigerator. The informational booklet says the microorganisms are still viable for up to two weeks at room temperature.
Enjoy your travels!
Liliane

Jun 9, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

http://www.maclungdisease.org/frequently-asked-questions

I have found this University of Texas article very informative. Hope you all like it!