Natural remedies for MAC

@irene5
What is the prophylactic anti biotic you are taking ? And would you share the dose and frequency?

@jolenesj There are a lot of teachers who have MAC/MAI. I think we worked in old buildings with poor ventilation systems. I’m 75 and was diagnosed around 2015 when I retired and have done it all in terms of meds. I am now down to nebulizing and a prophylactic antibiotic med to keep bronchiectasis flare ups at a minimum. That’s great you don’t have symptoms. I had nodular MAC. I had symptoms of fever, weight loss, fatigue etc.etc.. It was my retirement gift after 43 years of teaching K and 1. The best non prescription med I can offer you is vitamin D. Also maintain a healthy diet. You should take a probiotic because gut health is important. Wishing you the best! Irene5

@lenorj It is Levofloxacin (Levoquin). The dose is 500 mg. I take it on Mondays and Thursdays. This Rx is from my UMASS doctors who include my ID doctor and my pulmonologist . Irene5

@irene5

Most interesting. I got MAC when I was 55 - 3 years ago. I have taught for 37 years and I often wondered if the buildings I worked in might have caused this rare disease. As teachers we are exposed to children who are at school with awful coughs and infections. I am still teaching! I was on the big 3 for 14 months but the side effects were awful. The worst thing for me is fatigue and weight loss. The antibiotics messed up my gut. If I knew then what I know now I would not have taken the big 3. My MAC was cleared after 4 months but stayed on meds for another year. The annoying thing is the MAI has returned. We are doing watchful waiting. I am active, work, eat well, take probiotics, do daily airway clearance. I am functioning. I do not want to go back on those antibiotics. I must take vitamin D. It would be interesting to know how many teachers have NTM

@namd Truthfully, I believe there are a lot of us!! I think Terry did a survey a few years back and there were many teachers and nurses who contracted NTM. God bless you that you could keep working! After 43 years I just couldn’t go any further - or I should say my body and its infinite wisdom said to stop in 2014! I don’t think I could have done the meds and worked. I’m sure there are many who are able to do that. I’m sorry MAI has returned for you . All I’m going to tell you is I’ve been on this journey since 2015 and probably longer. I have chronic MAC/aspergillisis and BE but I’m ok. I’m 75 and have two German shepherds who give me a reason to get going every day - all day!! I’ve been cured on occasion, but golly gee that stuff is relentless . But I’m a tough cookie so I keep keeping on! The most important thing is to nebulize to keep other pathogens from moving in … like in The Mitten story - move over and another animal kept pushing in till the mitten burst! Nebulizing is probably the most important thing we can do to help ourselves! Good luck to you! Irene 5

@irene5
Yes, we need to stay strong. There are days when I am frustrated that I have to slow down, walking uphill causes breathlessness. I have Bronchiectasis too. As you say we need to keep the bacteria from doing more damage to our lungs. You have cheered me up as you are still going strong!

@irene5

Most interesting. I got MAC when I was 55 - 3 years ago. I have taught for 37 years and I often wondered if the buildings I worked in might have caused this rare disease. As teachers we are exposed to children who are at school with awful coughs and infections. I am still teaching! I was on the big 3 for 14 months but the side effects were awful. The worst thing for me is fatigue and weight loss. The antibiotics messed up my gut. If I knew then what I know now I would not have taken the big 3. My MAC was cleared after 4 months but stayed on meds for another year. The annoying thing is the MAI has returned. We are doing watchful waiting. I am active, work, eat well, take probiotics, do daily airway clearance. I am functioning. I do not want to go back on those antibiotics. I must take vitamin D. It would be interesting to know how many teachers have NTM

@irene5 Thank you for your reply! yes I am doing vitamin D. (I have bad osteoporosis). I am also doing zinc, vitamin c and Quercitin with Bromelain. Those are recommended by my primary physician to boost immunity in general.

@pacathy thanks for the reply. No I have not tested positive for MAC yet. I don’t know my NTM type yet.

My lungs have upper lung (apical) scarring on both lobes. And in bud tree nodes in the right mid and lingual lobes. There are some bronchiectatic changes. My pulmonologist said the tree in bud nodules are typical for NTM. So we did the sputum samples. I’m waiting for results. By November 1st I’ll either know, or will need to re do them or get a bronchoscope. We were looking to confirm or deny the interstitial lung comment made by the radiologist. My doc says what I have is not interstitial lung disease. Probably this NTM.

I usually cough when I lie on my back. Or when I bend over.. However when I get sick with a cold and then bronchitis, I cough much more. And I notice rattling in those mid lobes. The last time I was sick, I was put on a steroid inhaler for a month. As well as oral steroids for 5 days and a z pak twice. I also did a lot of albuterol nebulizer and some acytylcistine nebulizer. And I had an albuterol inhaler for as needed. My O2 SATs dropped to where I felt like my head was in a box with cotton . My O2 was maybe 93 percent officially at the primary care’s office. I know this isn’t not horrible but enough to feel like my head was in a box with cotton. I felt distant from people. My fever was only slightly elevated. It wasn’t flu nor covid. RSV wasn’t checked. But the lungs took a long time to heal. I had to take cough syrup to keep from coughing all night long.

After all that medicine. I now notice I can lay on my back without coughing. Idk if all the inhalers and nebulizers helped that or not. For me, it is the upper lung tickling that makes me cough when I am not experiencing anything like a bronchitis experience. Upper lobes is where the scars are and taking a deep breath makes my lungs tickle in the upper area. Sometimes I will also feel thin mucus rolling inside which also makes me cough. That will often happen when I lie on my back. Sometimes it happens when I lie down or change side positions in the bed. Normally when I am not sick my O2 SATs are 98 percent. So I don’t know if this is like what any of you experience or not.

Idk if I have MAC or not. It seems by the CT I probably have an NTM of some kind. And I do know I only have some bronchial changes in the mid right and lingual lobes. At least knowing I have the bronchial changes helps me understand why it is difficult for me to get over bronchitis and probably why it is all my colds end up as bronchitis. So that is something good to know. I am not exactly sure what caused the scarring. I did smoke heavily for 7 years in my late teens and into my 20s. Don’t smoke anything now nor since 20s. Had pneumonia once, bronchitis several times. Maybe the illnesses or the smoking made the scars. 🤷‍♀️