Natural remedies for MAC

@six5532one
Perhaps the water in the schools. I will always want to know where I got the NTM from. I am not a gardener so doubt it is from the soil. I have always been a healthy person but then bang this rare disease struck. Teaching is a wonderful profession but it saps your energy - having NTM and bronchiectasis is not ideal. I have had to go part time and give up a higher paid full time role of Assistant Head. Twelve hour days are not possible when you have a chronic disease.

@jolenesj I think your nurse friend gave good advice. The radiologist read my CT's as "likely MAC" even after I'd told tech to let them culture was negative. I asked pulmonologist about it and he said radiologist like putting in a potential diagnosis. IMO, they should add a couple possibilities that aren't so scary. 😀

@namd forgive my ignorance: do you mean you were exposed to water from school faucets and drinking fountains for drinking, washing hands, and cleaning? Are there additional ways to be exposed to school water I should be aware of?

I'm sorry the disease has affected your career.

I have a question for you all who have done the antibiotics and the alternative medicines also. How bad were your symptoms when you started the antibiotics? I am just now finding out I have an NTM. It is not yet identified. My pulmonologist said since my case is not that bad, he would not recommend antibiotics now. He wants to wait for fevers, weight loss and maybe cavitation in lungs. And I currently don’t have any of the symptoms he listed. This is why I’m going straight to the alternative medicines now. Did you all have the cavitation, weight loss and fevers? Is that why you had to go on the antibiotics?

I thought when this was first diagnosed we’d just find out what it was and go for the antibiotic treatment. I wanted it out! But my doc and speaking with another patient who is going through the antibiotic treatment and reading everyone’s experience, I see why my doc is not keen to jump right he on antibiotics.

I am so sorry you have been suffering so! I am hoping to avoid this getting that bad. But idk if that is possible. My long time coughing spells and positionally affected chronic cough started about 21 years ago. I’m 70 now. So whatever it is, it’s slow growing. Just seems when I get sick now, I get sicker and cough more severely for longer and now my O2 SATs get affected when sick. But not enough for the hospitalization. I am grateful it is in the early stages. I wish I could find a way to get over it. I don’t have any underlying other health issues, that I know of. I am not sure why I got the disease if I got it when I was 50. To help myself, I have increased exercise and am starting some of the breathing exercises, making sure I’m getting the fall vaccines of flu, Covid and RSV. And I’m wearing a mask in crowds, carrying hand sanitizer on my keys and washing hands to try to prevent colds. So far I’m doing fine since my last bout of bronchitis I finally got over at the beginning of August.

So for those of you who have done the antibiotics, why did your docs recommend them for you? Were your symptoms really bad and you had st had to go on them? Did you try the alternative medicines first and then go to the antibiotics? Or was it the other way around? Has anyone tried to find the specific homeopathic remedy for their bacteria?

In 2004 I had a chronic cough that lingered after getting sick with a cold. It lasted about 5 months. I was a teacher so getting colds was just part of the job. In 2005 had that cough return. At that time I was seeing an Accupuncturist who is also a homeopath. She prescribed the tuberculinum, which is homeopathic tuberculosis. This stopped the cough for a year. Each year I would need the one dose again to stop the cough. However in 2017, that remedy stopped working. Maybe it was all just placebo effect? The plan now is to look to see if there is a homeopathic version of the specific bacteria that I have, once it is revealed. Placebo effect or not, it can’t hurt.

@jolenesj

Hi J, I finished the daily antibiotics for 12 months and have been cleared of the active infection thus far. My symptoms progressed from getting Pneumonia several years in a row, to two times a year, to then never getting over it with standard antibiotic treatment. I went to go see an Infectious disease specialist once the MAC was dx at the request of my pulmonologist. the ID dr said to start the regime and stay on it for 12 months. Yes it was hard, I went onto psych meds to deal with the depression and anxiety that were brought on by the treatment . But now having been cleared of the MAC, I am reducing the psych meds and feel much better each month as I reduce meds. If your infection is mild, why not get a consultation from and ID specialist. My thought is get rid of it now before it progresses. I feel more confident now that I have been clear of it. but who knows, you may never have the imposing symptoms of fatigue, pain, repeat infections, inability to exercise that I experienced Prior to treatment. Food for thought.