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Nebulizer and saline treatment with daily exercise
Hi there. I was diagnosed with NTM MAC in January 2022 Confirmed with CT/PET scan and scope. Had. 5.5 cm mass in the right upper lobe. The only symptom I have is fatigue. No coughing, no blood, night sweats, shortness of breath. Nothing. The pulmonologist and ID doctor want me to start the big 3 antibiotics. I’m reluctant to do so because Overall I feel good and also I will be moving to another state in 2 months at which time I will need to find a whole new set of doctors. I would love to know if anyone out there has a pulmonologist and or Infectious Disease doctor in the Phoenix area. Also has anyone tried a homeopathic approach by just using a nebulizer and saline to clear the lungs and get daily exercise like walking, bike riding, yoga and meditation. I am really leaning towards this treatment for the next 6 months, then have a CT done afterwards to see if they’re any changes in the size of the mass and how my overall health is. Please let me know your feedback on this. Thanks.
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Hello, I have a question regarding your NJH visit. Did they get the approvals for the scheduled tests there from your insurance or it was your responsibility? I wonder how it works.
thank you
I have Medicare and a Supplemental Plan and worked within the Medicare Rules. I did secure approvals for the scheduled tests before going with my health insurance plans. All was taken care of by both insurances. I did reach out to the finacial office also at NJH to understand all and get their advice One would especially need to check all matters if one has an Advantage Plan and/or non Medicare Insurance Plans, to verify all financial responsibilites before going.
Sue- I may have posted this the other day incorrectly so reposting it in hopes this is done correctly.
VEST: I am not totally comfortable with the vest due to having the hiatal hernia and concerned of knowing if it affects other organs (heart) with all the vibrations. Giving me thought to it before I go back on since I am waiting for something more for it from Hill Rom. I can underststand the different thoughts about it.
GARDENING/CLOTHING: Oh, OK leave in area of garage or on the clothes line to air out and use another time or two. Thanks.
SHOES: I have tried on different times long before my diagnosis to do as you do. Must now for sure. Going to get a storage tub for them, maybe that might work at the door.
SIMPLEST/CHEAPEST NEBS: What is/are they that you are referring to.
THANK YOU. This communication with you is so looked forward to, I thank you.
DISINFECTING: I have the OMBRA with Aerobika and Aeroeclipse. NJH recommendation. Sometimes I think suggestions are possibly overkill with regard to how to care for the products.????? So boiling water doesn't melt the plastic.????? I hate having to use plastic. Do you put something between the bottom of the pan and the Aerobika as suggested so it doesn't touch the pan the water was boiled in??????? I boil tab water daily for ten minutes to clean it in liquid soap detergent. Glad to hear you use TabWater…in terms of the big picture and for disinfecting. I will be using the distilled water to rinse each time, I don't have soft water…one can see the calcium residue in the pan.
ASTHMA/BRONCHIECTASIS: Is it just asthma that you have or also bronchiectasis?
FIGURING IT OUT: Yes, I realize it takes time to figure out scheduling for ones health requirements, safety precautions and yet not overall and allow oneself to enjoy life also. I have constant clearing of the throat, mucus, and especially after eating….DO YOU???? This after eating is what is the hardest in terms of social life and meals out….alone or with friends. Any marvelous suggestions??????
ISOLATION: Do not want that and am doing my best to figure out all so that does not become my life. I learned about being a prisoner in your own home when I was involed with an elderly aunt who lived alone. I live alone. I promised myself not to allow that to happen to me.
CONTINUE DOING AND ABLE TO LET GO OF: Figuring that out now, also. I love to cook and eat, garden in the yard etc. etc. and dine out in 'good food' restaurants. Again, working on all that.
DAILY ROUTINE/VITAMINS: My life has been 90% of eating healthy and taking vitamins….that from childhood at home. I am taking D, zinc, C, Probiotic, Multi and other supplements. Going to also begin to take alfalfa. Are there specific vitamins that you suggest?????
i am walking (in the house) most all day long and specifically walking 15 minutes before the Nebulizer each morning as well as having water PH water before Nebulizer.
NAC: What brand, dosage etc. etc.????? I read about it months ago and wondered what to do. NJH did not suggest it. Do you take Muscinx liquid or tablet?????
THANK YOU: This communication with you is wonderful and I look forward to it. Thank you for the time you spend communicating.
Let me try to answer you in an orderly fashion here...I may have missed your post in the craziness of the holidays - we are only home for 2 weeks, trying to fit everything in, before we head back to our winter place.
NEBS: I replace my neb cups every 2-3 months, usually have 2 in rotation. I have learned here to replace the tubing at the same time. (I usually only neb once a day now.) Here is the one I am using now - I buy 5 at a a time:
https://justnebulizers.com/collections/nebulizer-sets/products/truneb-reusable-sidestream-nebulizer
DISINFECTING: I have a round silicon trivet that fits in the bottom of the saucepan to protect the parts from getting too hot.
ASTHMA/BRONCHIECTASIS: I have both, although the asthma causes me more day-to-day issues with my breathing.
FIGURING IT OUT: Throat clearing & mucus are always an issue. Mine is minimized by: keeping allergies controlled (will not share a recommendation - everyone is different in this respect) and using guaifenesin generic (Mucinex) 600mg long-acting tablets and NAC 600mg(?) twice a day. I currently use the NOW Brand of NAC and have found it reliable. For Guaifenesin or Mucinex, be sure to get it without a decongestant or any other ingredients.
DAILY ROUTINE/VITAMINS: I am a minimalist - I take a calcium/magnesium/zinc supplement. If I am "up North" in the winter, I take a low dose of Vitamin D. I take an Omega-3 supplement to try to protect my heart - long family history. I take Vitamin C & Zinc if I am fighting a respiratory "bug." That's it! No other stuff - my vitamin and mineral levels are tested every couple years by my primary, and are all normal. With a daily multi-vitamin, several were way too high, including 2 B vitamins, so I stopped - haven't noticed any difference. I am vaccinated against everything possible - crucial to me because of my next point.
CONTINUE DOING: Isolation is brutal for me. This holiday season I made it through 2 airports & a flight (masked) two family outings, 3 restaurant meals, church, a little off-peak shopping and numerous family/friend gatherings and so far am healthy. Three years ago, I never thought that could happen again! I do have to say my family - immediate and extended, have always been meticulous about staying home when ill, and notifying others if they get sick right after a gathering. Our close friends are the same way.
I appreciate your thanks. My writing is my way of giving back to this group, who helped me immeasurably when I was diagnosed over 5 years ago, and as I endured treatment for both MAC and Pseudomonas.
Sue
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17 ReactionsI have been diagnosed with MAC and have avoided treatment for about a year and a half. Do you know any details about NAC beyond what is in this thread?
Sue, I was diagnosed about a year ago for MAC and avoided treatment. I am now ready, but I am really scared. I live in the Asheville NC area. I have been researching. I did have a CT scan that indicates no visible damage in lungs. But I have some fatigue and persistent cough.
What do you recommend, besides the Big # antibiotics?
NAC inhalers?
Here is the dilemma with MAC - One can try rigorous alternative treatment and it may work. Or it may not and you need to progress to antibiotics. It is always important to discuss with your doctors why it is important to initiate treatment when they recommend it.
You said "...I was diagnosed about a year ago for MAC and avoided treatment..." The alternative to medication is not to just wait, but to adopt a lifestyle of airway clearance and other strategies.
Here is an excellent article that describes the options:
https://www.sciencedirect.com/science/article/pii/S0929664620302035
If you need antibiotic treatment, it is okay to be worried, but remember, many of us here have taken them successfully, and are here to encourage you and help you manage the side effects.
What have you been doing to try to heal your lungs without the medication?
Sue
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1 ReactionIt's great to hear you're exploring alternative treatments. However, with a diagnosed condition like NTM MAC and a sizable mass, it's crucial to discuss any treatment changes with your healthcare providers. They can guide you on a personalized approach and monitor your progress to ensure the best possible outcome for your health.
Hi Sue, I assume you were on the Big 3 for your MAC. Did you have symptoms right away and then started the Big 3 or did your Dr.'s have you wait until you had symptoms? How long did you take the meds and were there any side effects. You have been so helpful and full of so much information. thank you so much. Barbara
Hi Barbara, I started the Big 3 just 3 month after I was diagnosed, soon after the final culture results came back. First I needed several courses of treatment for pseudomonas.
It was never in question whether to use them - I was very sick and getting worse, because it took a long time to get diagnosed.
I was on the antibiotics for 18 months - at first 3 times a week, the last 6 months it was every day. Yes, there were side effects, but I managed to live with them, it just got bad when the meds were every day. BUT, that was quite a while ago, and the new protocol of adding Arikayce if the cultures did not convert to negative after 6 months did not exist then.
Knowing what I have learned in 5 1/2 years on Connect, IF I was asymptomatic AND I did not have M. abscessus, or cavities or numerous nodules in my lungs, I would try to convince my docs to do a 6 month trial of rigorous airway clearance with 7% saline, exercise and healthy diet.
That is not the same as "wait and watch" - it is actually an established non-antibiotic protocol, and requires monitoring with every 2-3 months and probably a repeat CT at 6 months. This article talks about it:
https://www.sciencedirect.com/science/article/pii/S0929664620302035
What are your doctors recommending today? Have you been able to find one who sees MAC often?
Sue