Extreme fatigue with MAC

@extratiredalway, Noooooo, I don't want to hear that about potting soil. That's my favorite thing to do, repot house plants and flowers in the summer. I'm still counting on mine not being that bad since the pulmonologist said I didn't have a lot of the bronchiectasis spots, but if that's the case why am I so very tired? Is it the suggestion after reading about what this really amounts to? Janice

@windwalker ...thank you for your reply...makes a lot of sense....I have Bronchiectasis too so I understand I will be dealing with repeated bouts of MAC....and repeated exposure to drugs to kill it. Do you currently have positive MAC cultures? If not what drugs are you taking to treat the Bronchiectasis? And aren’t you concerned about the damage to our bodies with all of these ,one term antibiotics?

@windwalker ....I enjoy reading your comments about fatigue and this relentless disease. However I was surprised to see you suggesting a CT every 2-5 years......I understand you shouldn’t be exposed to too much radiation but to check the progression of this disease or hopefully to get encouraging news that the disease is receding wouldn’t you suggest biannual CT scans?

@hydrang3a Hi. I never did the Big 3 antibiotics. In 2013, I went on cipro and doxycycline for 10 days a month on alternating months. My mac tested neg after one year on it. I stayed on that regimen as a preventative measure for three yrs. I then caught pseudomonas in 2016 and got that treated w/tobramycin. That knocked it out after 30 days, plus, as a bonus knocked out the constant cough I had foe 10 yrs. I have been on the toby and cipro on alternating months ever since. I still test neg for mac and pseudo. That doesn't mean that I am cured, it just means there is no detectable amount. Though infection free: I still have bad fatigue that is due to having bronchiectasis.

@jweisser Ha! That is one thing I have noticed about most of us here on this site; we LOVE to garden! Be sure to wear gloves and mask when handling potting soil. It has billions of mac per teaspoon in it. I don't even handle it any more period.

@terri M. I had a day yesterday with my pulmonologist, the nurse called on Thursday to say my sputum which I was never able to get a good specimen, was negative. I told her the fatigue has increased way more than ever before. She talked with the doctor, he said he wanted to see me the next day. He said my bronchiectasis does not appear to be bad enough to cause the fatigue I have. He looked back at old scans, back in 2015 and didn't see any difference in that time. He had the nurse take me walking and checked my oxygen, it dropped to 86 in just a few minutes, he put on oxygen and I walked more, oxygen slow coming back up. Sent me to the hospital for a chest ultra sound thinking it might be blood clot......it wasn't. Now he is going to do a heart valve echo next week. I suggested maybe I should lose some weight and get some exercise, he said that would probably help. Evidently I've had the bronchiectasis for a few years and he was most likely it will not progress anymore. I think he is leaning more toward heart valves instead of the bronchiectasis. I'm really lost since I'm new to the disease/condition. It must have been present in 2015 but no one ever mentioned it. So that's where I am, waiting for the heart scan/with bubbles?????? I still have no more energy. Thanks for listening. Janice

@jweisser I went through all of the heart tests, bubble test included. My heart is fine. I guess they have to check all possibilities. I swear, I can't help but wonder if our food isn't what is making us have this gawd-aweful fatigue. There seems to be no explanation for it. My infections are not active, my bronchiectasis isn't that bad.....so I don't understand the constant fatigue.

@jweisser I went through all of the heart tests, bubble test included. My heart is fine. I guess they have to check all possibilities. I swear, I can't help but wonder if our food isn't what is making us have this gawd-aweful fatigue. There seems to be no explanation for it. My infections are not active, my bronchiectasis isn't that bad.....so I don't understand the constant fatigue.

@terri M, You might be right about the food we eat. Way too many additives. I've just never had to contend with this kind of fatigue. When I'm sitting quilting or just relaxing I feel fine and think I can get up and do anything I want. Then once I do get up, I can only clean or cook for about 15 minutes until I'm totally wiped out. If nothing shows up on the tests, what in the world do you do? I have very bad body pain and I'm assuming that is just Fibromyalgia which I've had for years but I've never had the total fatigue. It's good to have someone to connect with. Thanks, Jan

@jweisser I've got the same thing here; do anything for 15 mins and then am wiped out also. My husband makes fun of the way I do things. I do a little bit here, and a little bit there, until it gets done. It's all I can do. I used to to keep a super neat house. Now, it is impossible to keep every room straight at the same time. oh well....