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

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!)

I agree eating properly is important and we do My wife is a great cook. We have no dairy flour red meat or boose. I was determind to beat this without antibiotics but it is not working. Some antibiotics work arithomicin was good but now it is loosing unless i take 750 a day and then my stomach is on fire.I have tried a nebulizer with different things. Not much success.

Thank you all for your input. This is my first time I have been on this site and I never realized how many people have mac. Before i new what I had. I was sent to a nut Dr. He pulled my wife off to the side and had a chat with her. It is good to hear that i am not the only nutty person with mac. Not good that u have it but good to share stories and results. One thing I know for sure is mac does not show up on a chest xray.

@garry - This is a truly frustrating disease, and answers can be hard to get.
Here is what I have learned since diagnosis about 2 years ago:
It is very important to find a pulmonologist well-versed in MAC and one who keeps up-to-date in treatment options. No easy task if you are not in a populous area. My Primary referred me immediately when bronch was suspected because there are so many variables. I switched pulmonologists when I realized the first one wasn't willing to consider any but the most basic forms of treatment.
Most people don't know "how I got it", but there are a lot of known vectors to avoid. Hot tubs and steam rooms top the list. Also, steamy showers, garden & potting soil, humidifiers and water filters, in some cases our very water supply... We all need to protect ourselves as best we can. So I have given up the community hot tub, limit my showers, wear mask & gloves for handling soil, pay someone to do the dusty yard work. But I haven't had my water tested because I believe the digestive tract kills MAC and don't have any kind of reflux. Others with reflux issues choose to be more cautious, boiling the water they use for cooking, drinking & cleaning their equipment.
Everyone responds differently to the medication. In my case it caused severe digestive issues, fatigue & weight loss, which I tolerated until the CT scan showed the lesions on my lungs were disappearing and my cough was gone. The infectious disease doc stopped it after 1 1/2 years to give my body a break. I still test positive in my sputum, but we are trying a 7% saline neb to eradicate it. At some point, if the saline isn't effective and the cough & spots come back, I'll probably be back on the meds.
If your doctor is considering treatment again, it is vital that sensitivity testing be done on you sputum culture so that the correct drugs are used, my understanding is that, except for maintenance (see @windwalker) single meds are not effective.
Sorry for the long post, but I am passionate about helping people advocate for themselves and get the answers they need.
By the way, there ARE people studying MAC! And it is an evolving knowledge base. National Jewish Health is a wonderful source of information, here is a link: https://www.nationaljewish.org/education/pro-ed/live-events/ntm-patient-videos.
Has your sputum been tested recently to be sure you are on the best regimen for what you have? There are many strains of MAC, and you may have a different one than the original, or the one you have may have become resistant to the antibiotic you have used for a long time.
Sue