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

Very interesting! I had no idea “our” GERD is so special!

I was first diagnosed with “silent reflux” because of a chronic cough and throat clearing. Started treatment with Pepcid, then was put on big doses of PPI's. Cough never went completely, so finally saw pulmonologist and discovered MAC. I never had heartburn until I tried to come off the PPI's. When you stop them, you get a rebound of increased acid production. It took a really long time (months) of extremely gradual tapering to get off them and I don’t think I’ll ever take them again! They shut down the acid, but you still have the reflux. If acid keeps the MAC down, maybe that's even counterproductive! We need more research for sure! Now I manage the reflux with sleeping position, diet, and going to bed with an empty stomach. There’s some new procedure in Europe for reflux that works with a nerve stimulator to increase the tone in the esophageal valves. That would be a great option to have!

I have hiatal hernia, I dont get heartburn because I eat correctly. But my stomach still comes up and I have to elevate until I fall asleep then everything falls back into place. I know because I wake up a few times at night and I am sleeping flat. I dont elevate bed, just pile a bunch of pillows up. I can take naps without stomach bother probably because not end of day so not so tired. My diet is pretty much common sense. I eat organic foods, mostly fruit and veggies. I eat a little meat and will Never give up sushi. Fish and rice good for stomach anyway. I eat as low or no fat as possible. after 2 years of taking pills my stomach and bowels were wiped out so it is a battle to keep weight on. I am 5'11" and weigh 125 on a good day. So, I Have to eat something for dinner or I drop too low. Before the pills I was always a little overweight, 5-10, so I never ate dinner, but now is different. YES my friends hate me, haha I've discovered that if I eat a large meal at night, my stomach actually stays down if I go to bed flat!!! Possibly the weight of the food keeps stomach in place. If I eat a little, it comes up. But I always; eat low fat and I mean common sense whole grain not frozen organic low fat real food, totally goes against the american diet. ( big pharma will argue against this for obvious reasons) I also work out. I have 10 pound weights and do squats,donkey kicks, arms, take stairs walk tons with dog, at 72 I get a lot of whistles from the back, til they see I am grandmas age!! My doc says I am maximizing my time and minimizing the disease. Everyone I see in her waiting room is fat. She is young and slim, and so am I. We talk fashion, she wears Ferragamo shoes, I dig it.
She says she has many patients with MAC who are in their 80's. Maybe I will be one. 2 documentaries to see, "Game Changer"
and "What the Health" I only take one pill, thyroxin, lowest dose and I am suspicious of that! My dad died at 104,,(took zero pills) Played tennis til 100, ate pretty much my diet, but big lunch, small dinner, french italian so did not buy into hamburger fries and coke poison crap.. My parents ate good whole foods, mom died 94. Everyone should do their own due diligence, beyond the doctor and beyond what all the big government agencies say to do, educate yourself. xo

Hello and thank you Sue and others who replied to my question about using a Britta filter: my tap water is from deep water wells run by the town... so it is municipal. Thanks to your answers I will not longer drink the water cold from the Britta. However, if I pour it in the tea kettle and bring it to a boil , do you think it is safe? Or should I boil it twice? Pam

@pamelasc1 Hi Pam - MAC/NTM are killed by heat well below the boiling point (I think I have read 145F?) so heating to boiling one time should be sufficient. I like my water COLD, so I place it in a well-scrubbed, covered pitcher in the refrigerator. I clean all cups, glasses, water bottles, pitchers, etc and my tea kettle with dish detergent, hot water and vigorous scrubbing regularly to keep any NTM and other germs at bay. This prevents the formation of the "biofilm" where NTM like to hide and reproduce. Studies of water pipes and shower heads seem to indicate the biofilm starts forming in a couple of weeks if not disturbed. When available, I use my dishwasher for this - but no space for one in my tiny house here in Texas. Sue

I have always been told that the only way to get rid of the NTMs is to boil it in water (that has already boiled) for 10 minutes adding an additional minute for each 1000 feet above sea level. So, unfortunately, cleaning and rinsing for however long in hot water will NOT get rid of the bacteria. Hope that this is helpful.

THanks for this info Sue: so if I took off my shower head and boiled it, would that get rid of any MAC? If so, this is a better solution than having to replace it. Pam

@pamelasc, an easy way to kill it in the showerhead is to fill a baggie with cleaning strength vinegar and twist tie it over the showerhead. Let sit for 3 hrs and remove. Gallon size baggie might be easier to use.

@pamelasc1 @windwalker Pam - Terri's vinegar solution is endorsed by the MAC specialists at National Jewish Health. At least in my home, it is certainly easier to do than removing the shower head and boiling (especially since I think repeated boiling would ruin the rubber washer/gasket thingies. It is important to use cleaning/industrial strength (7-10% acetic acid) as mixed results have been shown with household strength (3-5%.) I get mine from a friend who works in a lab, so don't know a retail source, sorry. I'm sure others here can tell you where they find it.
Terri - How often do you treat your shower heads? I admit my effort is hit-or-miss, kind of when I think of it, but possibly not often enough.
Sue

I have the shower head that you can flip open. Do you think I need to soak it with vinegar? I wipe it down after every use with a vinegar cleaning solution that has vinegar in it.