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

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

@garry Sorry to tell you, but it kind of does! I never had a radiologist call me at home till we moved to Tennessee for a hot second. This Dr. called me and told me to get right to my primary for further evaluation as there was something very suspicious on my X-ray. (Which was taken for a back issue). I calmed the poor man down and told him “No worries, I have nodular MAC, and my doctor is well aware.” I was actually touched by the fact he was so concerned and had called me! So I guess it kind of shows up as “something.” A CT scan will confirm MAC.

Garry: You are right. It's more like a CT scan will show if the MAC is evolving, tree in bud, etc. but it will not diagnose MAC. In fact, when I first had a CT scan they diagnosed me with severe asthma, Luckily a savvy doc did a bronch, and sputum tests and I learned what I had but by then I was coughing up blood. 2 years of the big 3 drugs left me with tinnitus, glaucoma, really messed up bowels, stomach cramps, wierd skin rashes, heart palps, loooow blood pressure, and way under weight. Mom died at 94, dad died at 104, neither took any pills for anything!!!, the pills demolished me. Just had a CT scan yesterday so will see the progression after 2 years no drugs. i actually feel pretty good now, tired but I move well and enjoy life. Learn as MUCH as you can, you'll find you know more than some docs. Keep on top of new research. xo

@ Unicorn I'm eighty-three and have had Mac for over ten years.Did just one antibiotic and loss hearing in one ear. Never touched the meds again. Nevertheless I have lost thirty pounds. Just when you think you're on to something the disease finds a new way to show its power. The fatigue rarely goes away.

Get rid of the steam room and hot tub...loaded with bacteria that causes the disease. Read up on it; you are doing yourself no good.

@garry Most definitely steer clear of hot tubs and steam rooms. It is also advised to not use swimming pools and use caution with showerheads. I stopped taking showers and use the tub...If I am dying for a shower....I have cheap Lowes showerheads and throw them out usually after a few uses. Some on this site soak their shower heads in vinegar. Also, the refrigerator ice and water bar should be shunned. If you scroll back through this Mayo site you will pick up some very good tips on how to limit your exposure to MAC. I have it in my body.....and do not want to add more to my collection. Best, Kate

@irene5 You are right. It was an xray that alerted my primary's partner that something was there, followed by a CT that confirmed bronchiectasis and "suspected MAC" which was confirmed by sputum culture. It was severe enough that the pulmonologist started treatment while waiting for sensitivity tests to come back, which confirmed his choice. It was also a repeat CT that showed enough improvement to quit the meds and go with just 7% saline to keep the remaining infection under control. Like @unicorn my body became more and more unhappy with the meds over time, especially after 6 months of every day!

Yes Sue, at age 70 my body says “no thank you” to those everyday too. Some people tolerate them well. I was not one of those. I am on the alternating meds like Terri for the bronchiectasis and will discuss the 7% saline next week with my ID doctor at UMass. I want MAC gone for all of us! Irene