(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Hello BLC and Maryke and Jill,

I was diagnosed with MAC about 7 years ago.- also known as NTM for Nontuberculous Mycobacteria - see info here: http://www.nationaljewish.org/healthinfo/conditions/ntm/
(I'm not Jewish but this is a good site.) See my post above from March 2013.

I am on the regime of the standard 3 antibiotics. Originally I took the drugs EVERYDAY and I barely tolerated them. Was nauseated, occasionally throwing up, lethargic. My pulmonologist told me about several of his patients with MAC and what they do to overcome the side effects of the drugs. He told me to 'find what works for me', to feel better on the drugs. I tried taking them at night, or in the morning, after eating, before eating -- lots of different things. Taking them 1-2 hours before I went to bed, after eating, seemed to help the nausea. After 18 months, I got a new fabulous pulmonologist - an expert on MAC. I gradually felt better. After 3 years, I was going out of the country and negotiated with my doc about going off the drugs, which I did. But after 6 months I was really ill again. Was put back on the drugs but this time taking them only 3 days/week. Been doing it ever since with little side effects. I take them with orange juice when I get up in the morning, and tolerate this just fine now compared to taking them every day! For me, I'll most probably be taking them for the rest of my life. I've had 2 lung biopsies and one lung lavage (wash) over the past 7 years, to see if things have spread.

Besides the drugs,MY DOCTOR RECOMMENDED SEVERAL OTHER THINGS I need to do to help myself feel better. (1) Get some form of exercise to get my lungs expanding -- Yoga or strenuous walking or Pilates, etc. I tried Pilates after being diagnosed seven years ago and have been doing it 2-3 times a week since. This definitely gets my lungs expanding, as I cough when doing Pilates - which is a good thing! I also get out and briskly walk when I can. (2) Plenty of rest -- getting warn down is really easy with this disease. And getting enough rest (whether it's being asleep or merely resting) is important. (3) Get enough Vitamin D, since there is a connection with this and MAC - doctors don't yet know what the connection is.

Also, have your eyes examined early by a very good ophthalmologist. One of the drugs can drastically affect your vision. And have your blood checked regularly, per your doctors orders, since your body is filtering these drugs which can cause liver or kidney issues.

@lindam272 Thanks! I did some searching. Microbion suggests it will help those with MAC, as well: "In addition to CF-related lung infection, there are multiple lower respiratory tract infections and conditions where the presence of microbial pathogens and their associated biofilm contribute to lung function decline. Infectious pathogens such as Pseudomonas spp., Staphylococcus spp., Streptococcus spp., Mycobacterium spp., or Haemophilus spp. may contribute to lung diseases such as non-CF bronchiectasis, bronchitis, community- or ventilator-associated pneumonia, non-tuberculous mycobacterium infection, etc., that are expected to benefit from an inhaled application of pravibismane or other Microbion compounds." https://microbioncorp.com/pipeline/respiratory

Hi all, just wanted to bring up having 1 CF gene with MAC]MAI, it was bought up years ago on here and sure enough I had a test for the CF gene after getting MAI and returned positive for 1 CF gene which could be why I was susceptible. Now there is a treatment called Ttrikafta which sounds fantastic, it counteracts that nasty CF gene, my daughter has just been to a seminar on it at the hosp and was impressed.

@pamelasc1 I think that should be fine. I had to take prednisone when I got poison ivy in my lungs due to our neighbor burning it and my inhaling it. (Talk about bad luck) Prednisone was a godsend for me. Generally, MAC patients don’t take prednisone, but when you need it, you need it! irene5

@lindam272 Thanks! I did some searching. Microbion suggests it will help those with MAC, as well: "In addition to CF-related lung infection, there are multiple lower respiratory tract infections and conditions where the presence of microbial pathogens and their associated biofilm contribute to lung function decline. Infectious pathogens such as Pseudomonas spp., Staphylococcus spp., Streptococcus spp., Mycobacterium spp., or Haemophilus spp. may contribute to lung diseases such as non-CF bronchiectasis, bronchitis, community- or ventilator-associated pneumonia, non-tuberculous mycobacterium infection, etc., that are expected to benefit from an inhaled application of pravibismane or other Microbion compounds." https://microbioncorp.com/pipeline/respiratory

Thank you everyone for writing down your experiences with prednisone.. I am hesitant to use it, even for two weeks. I might try using my nebulizer with albuterol first and see if that brings any relief. I will let you know. Just want to say what an amazing and supportive group this is and how important you all are to me! Thank you for taking the time to write. Pam

I’m curious about inflammation that accompanies Mac. I’ve had problems with ear and sinus congestion and the ENT told me that the inflammation goes with Mac and I’d always have it. Yikes. I started taking a cortisone nasal spray and a sort of allergy medication that reduces inflammation but hate to take them long term. I also started taking curcumin/turmeric extract so hoping that helps.