My MAC and bronchiectasis treatment

@migizii, From my point-of-view not needing an antibiotic for a year or close to it qualifies as a big success. I seem to need a round every four or so months. Hope 7% is gonna change all that. Anyway, congrats to you for makin' it a year.

@derbeltal Well, everyone is different - you will hear that a lot here! My digestive issues were up and down the whole time on the antibiotics - them getting much worse after 6 months of daily meds contributed to the doc stopping the drugs. I have been off for 6 weeks now, and the stomach issues are subsiding. Here is what I have been doing, at the direction of my primary doc, to help it along.
Take daily probiotics. Use a proton-pump inhibitor (PPI) - in my case Omeperazole daily, in the morning. She originally suggested two weeks & stop, then continue at two week intervals, up to 2 months, if the issues persist. I will try stopping again next week, and am hopeful of being done as my stomach is feeling much better. (She also said to take Tums or similar for digestive upsets, something you are not supposed to do while on the antibiotics.)
To counter the weight loss, which I could ill afford, I have been forcing myself to eat a small high-nutrition, high-calorie bit of food every two hours for over a year. I eat an ounce of cheese, a handful of cashews, a scoop of peanut butter, a scoop of guacamole on crackers, 1/2 a protein bar, 6-8 ounces of high-calorie homemade fruit/veg/protein smoothie or similar. I do it, whether I am hungry or not, from 10 am until at least 6 pm, plus meals. Also, Carnation Instant breakfast in my coffee. This stopped the weight loss, but since stopping the meds I still have no appetite and haven't regained any weight.
My primary says to be patient - it is not unreasonable to take 4-6 months for everything to rebalance after 18 months of the meds.
Good luck as you continue this journey. Feel free to ask more questions as they arise.
Sue

@derbeltal Well, everyone is different - you will hear that a lot here! My digestive issues were up and down the whole time on the antibiotics - them getting much worse after 6 months of daily meds contributed to the doc stopping the drugs. I have been off for 6 weeks now, and the stomach issues are subsiding. Here is what I have been doing, at the direction of my primary doc, to help it along.
Take daily probiotics. Use a proton-pump inhibitor (PPI) - in my case Omeperazole daily, in the morning. She originally suggested two weeks & stop, then continue at two week intervals, up to 2 months, if the issues persist. I will try stopping again next week, and am hopeful of being done as my stomach is feeling much better. (She also said to take Tums or similar for digestive upsets, something you are not supposed to do while on the antibiotics.)
To counter the weight loss, which I could ill afford, I have been forcing myself to eat a small high-nutrition, high-calorie bit of food every two hours for over a year. I eat an ounce of cheese, a handful of cashews, a scoop of peanut butter, a scoop of guacamole on crackers, 1/2 a protein bar, 6-8 ounces of high-calorie homemade fruit/veg/protein smoothie or similar. I do it, whether I am hungry or not, from 10 am until at least 6 pm, plus meals. Also, Carnation Instant breakfast in my coffee. This stopped the weight loss, but since stopping the meds I still have no appetite and haven't regained any weight.
My primary says to be patient - it is not unreasonable to take 4-6 months for everything to rebalance after 18 months of the meds.
Good luck as you continue this journey. Feel free to ask more questions as they arise.
Sue

just wondering if anyone is having heart palpitations with this disease?? I have been off meds for 2 years, destroyed my organs, and now the palpitations are getting much worse. High hemoglobin and hemotocrit, Possibly going on oxygen may help. Not the fashion statement I was hoping for.

@unicorn I did not get palpitations from MAC but because I was anxious about having MAC and then about the palpitations I got them. Hope you can get this sorted out soon. Take Care Heather

@unicorn What does your doc have to say about the palpitations? As far as I know they are not typically a MAC or bronchiectasis symptom, but we are all different. In your situation I would surely want them to find a diagnosis that fit the symptoms. Sue

thanks guys. Still going through testing to figure out whats what. I just wasn't sure if palpitations were one of the results of the big 3. It seems gerd and a lot of other things are, but now that I know they are not necessarily a side effect I will persue more forcefully. All the other things I got from the big three have stayed with me for 2 years since stopping. The stomach cramps have stopped but the bowels are not perfect so the weight loss is constant. Had blood tests and hemotacrit and hemoglobin slightly over normal. One cause of that is low oxygen, so I thought maybe we all had the palpitations. But not the case so maybe high cholesterol or something else. thanks again