Natural remedies for MAC

Med08, here's a copy of a comment and question I asked in July which relates to your question. You may be able to find replies to it by searching for the conversation within this group. "Has anyone tried herbal support for immune system and lung health? Traditional Chinese medicine apparently includes several herbs which have been researched and found helpful as adjuncts to the typical NTM meds. Here's an article from NIH (link below). I don't have the expertise or patience to wade through all the technicalities of the studies, but found the results interesting, and wonder if anyone has tried any. The one I'm looking into is Astragalus membranaceus. I'm not interested in high dosages sold in capsules by various companies which may or may not be reliable; Astragalus can be consumed as a tea. Would love to know what others might have learned or tried."
https://pmc.ncbi.nlm.nih.gov/articles/PMC6630501/.

@winema I’m drinking pineapple juice and Mullein tea. I drank pineapple juice growing up. So it’s not new. The tea is. I don’t overdo it.

I don’t want to sound like a downer here but I probably will and it kind of reflects my frustration or perhaps more likely fatigue with this journey. My apologies to anyone who has already read some of my comments. I love reading about people’s experiences with anything that helps NTM (Mac for me) as well as words of encouragement for those of us who are getting worn out by this disease.

I was diagnosed with Mac about 7 years ago. I was eager to start the Big 3, having been benevolently misled by my then respirologist who told me that they would cure my Mac in 12-18 months. Unfortunately, I got side effects after 6 months, found an NTM specialist, stopped the Big 3 and I’ve been faithfully nebulizing twice a day for over 6 years.

Re: alternative treatments/natural remedies - I’ve tried just about everything available to me where I live: naturopath, homeopath, osteopath, too many supplements and teas to list here, acupuncture and chinese medicine, “energy” work, gluten free diet, lactose free diet, low inflammation diet, home water filtration system and a variety of exercise programs. I’ve seen several medical specialists as (I believe) this disease has had an impact on my immune system, sinuses and GI system. I like to think I gave everything enough time to have some benefit if it was going to. I still exercise every day, take some supplements and adhere to healthy dietary changes. Overall, it’s been an exhausting roller coaster ride.

I like to think that the research, time and money from engaging in these interventions have been helpful as my lungs have been fairly stable over the last 6 years. Things could be worse for me without them. It was important for me to try alternative and supportive treatments so that I feel that I’ve done everything I could to keep myself well. However, I’m at the point where I’d be begging for medications if I thought I could avoid additional permanent side effects.

I strongly support everyone’s efforts to explore alternative treatments and appreciate when you share your experiences here. I hope you find success in your endeavours and I hope you share them with us! This forum has been invaluable in giving me ideas, kind and supportive feedback and, perhaps most of all, hope. Thanks to everyone who contributes here.

@kathyhg Since you quit the medications and nebulize twice a day, have you still tested positive for MAC? I'm in the same situation whereby I was on the big 3 with the same promise, but I had to quit after 14 months due to side effects and tested positive 3 months after I quit. Was put on an even more aggressive medication therapy and couldn't even tolerate it for 3 weeks. So now I just nebulize 7% , use a vest and exercise. What did you mean by, "I’m at the point where I’d be begging for medications if I thought I could avoid additional permanent side effects."? Have your symptoms gotten worse? Or did you mean the routine is exhausting and time consuming?

Thanks for posting about the alternative treatments/natural remedies. I think a lot of us wonder about all that and whether it could work.

I’ve always tested positive for Mac since I was diagnosed in 2018. My AFB has fluctuated from few to 3+ since I started nebulizing and my chest CTs continually change but don’t get much better or worse.

Re: alternative therapies- I’ve spent a lot of time and money on alternative therapies and I’m not sure any of them have really made a difference for me. I’d still encourage others to try any of these if they can afford them and if they think something might help.

The reason I said that I would almost beg to start meds again is that it’s exhausting to nebulize twice a day for so long without really seeing much change. At the risk of sounding melodramatic, it can also get very discouraging and can really take over your life. It has been an ongoing challenge for me to remain motivated and hopeful and not let Mac totally take over my life.

Hope this answers your questions!

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.

I am new to this disease and have not started treatment yet..What side effects are common

@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

@jolenesj Perhaps I missed it in another post. But if you're doing watchful waiting (which is not uncommon), did the doctor recommend airway clearance for you? Are you seeing a doc who sees MAC frequently? It's not common and some docs rarely see it.

@sak123 I see you're new to the group. Welcome. It's a helpful group though one we all wish we didn't need.
Did you test positive for MAC already? The side effects vary with the drug. If you'll share a bit more about your lung status and drugs proposed, the group can share their experiences.