Natural remedies for MAC

@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 Hi thank you for your reply. No my pulmonologist did not recommend any airway clearance techniques. But from my research I see that is important. I found some through this group! My pulmonologist’s focus is interstitial lung disease. I went to him because of a note from a radiologist I had on an X-ray this summer. It said mild chronic intestinal lung disease. I was getting the X-ray because I had bronchitis from a cold with low O2 SATs and I think my primary was ruling out pneumonia. This is what started my exploration. I do have lung scarring in my upper lobes, but not enough to call it interstitial lung disease.

I think in this same group there is an infectious disease doctor that specializes in NTM. I know there is one at Shands, the teaching hospital where my pulmonologist group is. I am not 100% sure if this NTM doctor is in the pulmonary group or just in infectious diseases. But I do plan to bring his name up to my doctor at my appointment. That appointment isn’t until December 16. On December 16, a few hours before my pulmonologist appointment, I will be doing a lung function test also. Hopefully by then, we will know what kind of NTM I have. I sort of suspect I might need a bronchoscope because it was really hard for me to get any real sputum out. I should know by November 1 if those samples produced anything or not.

Do you think I should just try to get in or switch to this infectious disease doc? Or do people have both a pulmonologist and infectious disease doc? I need to find out what department the NTM doc is in, I think….

@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. 🤷‍♀️

Oops I apologize. I see this was not directed to me. This is supposed to be answered by @sak123, not me.

@jolenesj sounds like a good plan! I have all three of the osteos! The joy of it all! (Irene)

@med08 when I go to my Accupuncturist she may ask what I’d like to work on, but since she is a 5 element Accupuncturist, she usually takes my pulses and works on the meridians that are deficient. However, since I have had this discovery of having an NTM of some kind, she also works specifically on the lung meridians.

5 element acupuncturists work to balance the whole body. That whole body balance is a theory that if the body is in balance, it can heal itself. The 5 element acupuncturists also have to know Traditional Chinese acupuncture. I’m not exactly sure how they are different from each other because google AI also says the traditional Chinese method also works to balance the body.

@jolenesj I'm glad you described what you are going thru. It sounds like a lot to deal with. It also sounds quite similar to my story with the frequent bronchitis and persistent colds . My CT's also had trees in bud, ground glass and bronchiectasis. Local docs and Mayo thought I had Mac, but I had trouble getting good sample. Mayo did bronch for good specime and it didn't grow MAC. I don't know how common it is to have the changes and it not be MAC. (Btw-CT a year later looked similar with "waxing and waning" changes and still said suggestive of MAC. ) My doc had told me some of the findings would not change. The theory is that I had MAC and cleared it on my own or large amts of post nasal secretions seeping into lungs caused the changes. I was started on airway clearance with albuterol nebulizer (mild asthma) and aerobika and postural drainage. Also told to get 30" exercise/day. My sinuses were also treated aggressively until clear. Had to quit postural drainage due to it causing reflux. I now do airway clearance with 7% saline and am doing much better!
I never had decreasing sats and am glad that improved for you. Must have been scary.
As far as docs go, I think most of us go to a pulmonologist and see an infectious disease doc when it's definite that it's MAC. If you've been reading here, you've probably seen that sometimes docs will sometimes suggest watching and waiting rather than start meds immediately.
There's a list of centers that treat MAC patients regularly. Here's a link. https://www.copdfoundation.org/About-Us/Press-Room/Press-Releases/Article/2166/Thirty-three-centers-join-new-Bronchiectasis-and-NTM-Care-Center-Network.aspx

ITheres also an ABC of bronchiectasis that our mentor Sue has put together. I'll send those tomorrow.
Hang in there and ask questions. People here are very kind and helpful.

@pacathy Thank you so much for your reply. It is helpful to know you have experienced the same kind of history. Also helpful to know diagnosis can be inconclusive too. Yours is interesting. And it is a bit hopeful too that you seemed to have kicked the bacteria out. (As most of the population does!) I will be interested in finding out about the 7% saline treatment for the lungs and other things that can be done to help the bronchiectasis. It seems keeping them clear is really key to keep from getting bronchitis, pneumonia and more or new NTM. Looking forward to learning more. 😊

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

@jolenesj
Here's a video on airway clearance from McShane, a leading expert on MAC
https://m.youtube.com/watch?v=VEYK67nld_o
Here are resources our mentor, Sue, put together.
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
Just to clarify...it is only a theory that my CT findings were because I had MAC and cleared it. The other possibility is that it was all the sinus drainage causing micro aspiration. It seems unlikely I'll find out for sure.
I hope these are helpful. As I said, keep asking questions and keep us posted.

Note: one easy/free thing you could try while you await appts is the Autogenic drainage app. It coaches thru breath holding and huff coughing. There are also youtube videos on huff cough (a gentler cough to clear).
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/?pg=7#comment-1346071
I'm not sure which page will come up, but huff coughing video's are in sue's post on page 7. Scoop recently reposted, but this one came up first.