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

@toni1132 We have planted low-growing native groundcover in our yard and next door, and it is irrigated because it is under citrus trees, so there is little dust. The other side it a septic leach field covered with gravel and then native plants, again little dust. Our windows our usually closed and we run a house fan and air purifier. Since we started this, minimal dust inside. On windy days I try to stay in or wear a N95 mask (my brother and I look like twins on those days - he lives across the street and also has lung issues.) A friend handles my bird feeders for me or I mask and glove. I switched from open water for the birds to a chicken-waterer to keep out their droppings and feathers - then I wash hands after I clean i & sanitize it.
Birds in the house have been on our no-go list for years - we had parakeets with psittacosis many years ago and the MD from the state health department told us about the risks because we had ashtmatic kids and an immuno-compromised older adult in the house. Of course we used to make an exception when my daughter's rescue parrot needed care, but even that is past. If you decide to keep your feathered friends, do you have someone else to do cage cleaning? If you must, my ID doc says gloves and N95 mask, then toss the gloves.

@anniepie....good luck to you tomorrow with your testing...and let us know. So Sorry. Kate

@toni1132 ..Hi Toni...Yes, I still use a waterpik and question it's use all the time but feel I need it as I have had extensive gum surgery. I add some colloidal silver to the water towards the end of the session every so often and hope that takes care of the bacteria....but that is only my best guess how to deal with accumulating bacteria in the lines. I do know you can order new tubing if you contact the manufacturer. Kate

Hi I went for years not knowing what I had. Finally a young intern sent me to a specialist and he did at lung test. After that I went on 3 drugs for 6 months. That was 5 years ago. Now I am trying to find some new drugs because the ones I am on are not working. I now have 2 spots on my lungs. I went on an fruit diet. I understood that infection can not live in a normal ph level . So i only ate fruit and vegitables for 6 months lost 30 lbs. Not trying to loose weightjust wanted to eat healthier. I was off all antibiotics for 3 months and now it is back. I believe eatting propperly helped. I was working hard over the three months I was anibiotic free and I got run down.
I have a steam room and a ht tub that I regulary use trying to loosen my chest up. It is not working. Not sure what to do next Garry

I’m far from being an expert on Mac but I don’t think steam rooms or hot tubs are good if you have Mac. There are other ways to loosen your chest that don’t compound your respiratory issues.

Using a nebulizer with saline is probably the best way to go but there are so may people on this forum who will have good suggestions for you.

Good luck!

What??!! Someone wants to sit in a hot tub or steam room ? Wow, one other name for this disease is Hot Tub Disease because the MAC is so prevalent in the steam. It might loosen mucous, just enough to let tons of the MAC little devils in, bad idea

@garry I am so sorry for your frustrating situation. Years ago we would say ,”c’est la vie!”. Now” c’est la guerre” seems more appropriate. It is a good idea to loosen that stuff up in order to get it out , but I am sorry to tell you a hot tub is a big no no for MAC patients. Feel free to google that. Hope you feel better soon. No bueno as my daughter says! (Irene5)

I use to have my tub in the basement. I have heard that about hot tubs. Mine now is outside in the fresh air.I have also heard that the mac virus is every were in the soil etc. I do not use chlorine in my tub . I use copper I am always cold so I find that the steam room and ht warm me up. If I was sure this was causing my mac I would get rid of it. I got mac years ago before I had a ht.

Garry: I know very few people who get rid of this disease and not get it back. Possibly they are young and strong and dont have bronchiectasis, which promotes re-infection. I personally dont think think pills work and that they do more harm than good. Unfortunately it is all we have right now. My infectious disease doc said all research is going to aids now, and not MAC. There may be some new inhalers coming in the next 5 to 10 years though. The pills cause massive weight loss and it is hard to keep the weight on, (for me anyway). It's always best to eat well, and exercise. Try to maximize your survival skills to fight off symptoms. My lung doc said this is a slow growing bacteria and she has patients in their 80"s, good enough for me! Work out and eat organic! xo

@garry I think that is very good that your hot tub is outside. What I understand about MAC is that we don’t want to continually reinfect ourselves. I have no earthly clue (just maybes) about how/where I got MAC, but I am careful to avoid anything that I know could potentially “feed” it or be a source. Yes, MAC is everywhere, so we can’t avoid that. However, my goal is to get it gone from my body. I may have taught the importance of sharing in kindergarten, but I don’t like sharing my body with this opportunistic pathogen! (Nope - not one single bit!)