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Posts (7)

3 days ago · Dentist in MAC & Bronchiectasis

My hygienist now uses an ultrasonic scaler instead of the older hand held scraper kind of tools when she cleans our teeth, and she really thinks it’s better for your teeth. It means I’m breathing in the mist the whole time she’s working. It’s cool rather than steamy, but I’m wondering if I’m being exposed to a big dose of mycobacteria anyway. I’m (hopefully) just about to finish my course of the big three and don’t want to have to start over! Anyone have any thoughts or experience that might help?

Thu, Jan 9 8:52am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

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!

Sep 13, 2019 · Extreme fatigue with MAC in MAC & Bronchiectasis

Non-tuberculous Mycobacteria

Aug 23, 2019 · In shock after MAC diagnosis in MAC & Bronchiectasis

I’m so sorry about your loss of vision! Can you please tell us what you noticed and when? And how they confirmed it was due to your antibiotics? It is great news that it's improving now that you are off the meds!

Aug 13, 2019 · Exposure to bacterium etc. if using night guard. in MAC & Bronchiectasis

I,too, have been using a night guard for many years. I was always told to put in in the case and fill it with water between uses. Now, since I have MAC, I brush the splint and the case in the morning and fill the case with distilled water, then I brush it and the case again at night, rinse the case with distilled water and let the case dry out over night. Wish we had some research to show what's the best way!

Jul 25, 2019 · Losing weight due to MAC in MAC & Bronchiectasis

@flib That's so scary! Do you have trouble making yourself eat? Are you on treatment for the MAC?
I was thought to have MAC for about 3 years (fibronodular pattern with bronchiectasis on CT scan) but not treated initially because I just had a dry cough. I was seeing my pulmonologist every 6 months when I started to lose weight, slowly, a couple of pounds over 6 months (5’ 4”, started at 120). He told me I should work to gain weight, which I did, but I was down a few more pounds when I saw him next. Same talk about how important it is to keep your weight up. Then I had hemoptysis a month later and had developed a small cavity on CT scan. Bronchoscopy, positive cultures, and the big 3 followed in short order. By that time I had developed a serious anorexia and even an aversion to food. It was really hard to make myself eat. Fortunately, I only had nausea, cramping, and diarrhea for a day or 2 when I started the meds. Imodium helped, and I took them all on an empty stomach at bedtime. It took about a month of treating food like medicine before I began to be able to eat more normally and to stabilize my weight. I’m now regaining lost weight. My low was 105, about a month into treatment. I’m now at 6 month on meds, and my weight is back up to 113.
So, it seems to me the disease itself can cause weight loss, although clearly the meds can make some people lose weight as well. For me, the meds helped me turn it around. I focused on making sure I ate lots of protein, drank a smoothie made with kefir every day, and I take a multivitamin. I worked on getting lots of sleep and would nap very day when I needed it, and I think that may have helped. Also lucky to be retired and able to baby myself!
Please keep us posted!

May 19, 2019 · Sharp pin like plain in MAC & Bronchiectasis

I had been having some occasional pains like what you describe. I would get a sharp chest pain that was pleuritic (worse with a deep breath or cough, and it would last anywhere from a few hours to a few days. I would try to relate it to exercise or a change in sleeping position,but usually just couldn’t figure out what it was. And never bad enough, or lasting long enough to see a doctor for it. And now that I reflect, I don’t think I’ve had any since starting on the Big Three antibiotic treatment 4 months ago. So, maybe it was due to the MAC.