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Thu, Feb 20 9:09am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi
Terry , ct scan is done but I dont see doc for awhile, a month I think. xo

Tue, Feb 4 8:11am · My MAC and bronchiectasis treatment in MAC & Bronchiectasis

Hi! Thanks Terry, see cardiologist Thursday and will read her your email. I am trying to avoid meds, but may have to go on something. The plant based diet (with a little cheating) helped my cholesterol and sugar go down so doc said to just keep doing what I'm doing, a little encouragement. I can deal with the bowels, the hiatal hernia, the gerd, but the heart is really scary. I told my son if I have a stroke to just throw me in the ocean, as I will not go into a care home…..I cancelled Europe this year but am going on a dog vacay up to Big Sur! Staying in country close to hospitals in gorgeous areas. xo

Mon, Feb 3 6:15pm · My MAC and bronchiectasis treatment in MAC & Bronchiectasis

thanks Gina, me too. I think mine is just another complication of the MAC, or the hiatal hernia and gerd which is also complication of the MAC. !

Mon, Feb 3 4:00pm · My MAC and bronchiectasis treatment in MAC & Bronchiectasis

any heart problems before the palpitations? high blood pressure or cholesterol, smoke or drink, sedentary??

Mon, Feb 3 8:40am · My MAC and bronchiectasis treatment in MAC & Bronchiectasis

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

Sun, Feb 2 12:05pm · My MAC and bronchiectasis treatment in MAC & Bronchiectasis

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.

Sat, Jan 25 4:35pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

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

Sat, Jan 25 11:36am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

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