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MAC/NTM is Different for Everyone, Treatment might be different too
What is the point of this discussion?
Let's stop scaring one another when we talk about treatment. Based on the severity of our infections, some people NEED antibiotic therapy to regain their health. Others of us are fortunate to be able to maintain with airway clearance, saline nebs, diet and exercise.
What do we have in common?
We have MAC or NTM, usually with Bronchictasis, COPD, or another chronic lung condition.
We have struggled to find a health care team that understands these rare conditions and how to treat them.
We came to Mayo Connect seeking answers and support.
How are we different?
Based on our own experiences, we each have a personal point of view on how MAC/NTM and Bronchiectasis "should" be treated.
Our conditions vary greatly in severity and symptoms.
We each bring our own "hotdish" of age, other conditions, drug tolerance or allergies, etc.
A treatment that works for me may be intolerable to you and vice versa.
Let's remember that Mayo Connect is here to provide evidence-based information, as well as to share personal journeys.
So what to say when talking about treatment?
It is perfectly okay for me to say "I had a bad reaction to Drug A" but not to say "Nobody should take Drug A!" if Drug A is the medically accepted protocol for treating a condition.
Likewise it is okay to say "There is a risk of X Side Effect" and even better to say "Y% of people experience this side effect." Or "Here is how to recognize this side effect..."
And it is wonderful to talk about all the additional ways we have found to stay healthy, as long as they are medically sound.
What have you personally found to be the most, or the least helpful in our support group?
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Hi Irene, The Pari Vios works well for me. It is the first neb I've used besides the one I received through Kaiser. The mist coming from the Pari is much more powerful. The only trouble I am having is, I bought new wing tip replacement tubing and, for the life of me, I cannot get the old tubing off the compressor I am going to call Pari today to hopefully get some good advice.
As for the manuka honey, I mostly take it when I am coughing a lot in the evening and know I am going to have a problem with sleep. I will take about a 1/2 teaspoon before bed (or if I have a cough attack in the middle of the night, I'll get up and have it). I am not saying it will work the same for everyone but, for me, it is soothing and helps calm the cough down.
Also, I am a performer and have found having a cup of lemon ginger tea with a generous scoop (about 1 full tsp +) taken before showtime has been working well. Thank goodness! I did not cough once during the past 2 shows! So, I reserve it for times when the cough is active and I use it as a preventative measure (before a show or meeting). It is quite yummy too. I understand your concern about being pre diabetic. Perhaps you can ask your dr if it would be ok to use sparingly. Best of luck to you!
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2 ReactionsThank you for the feedback. I suppose you tried twisting the tubing side to side as well as pulling straight out? I find that works. Just twist it hard to the right or left and pull and it should come off. Otherwise could you not cut the old tubing tip off? I do not know how often you replace the tubing or if you are leaving it on the compressor from treatment to treatment? It is important to run the compressor with the cup removed from the tubing for 3 minutes after each treatment. That helps to dry it out. Then remove tube from the compressor and hang it in a safe clean place till the next use. Replace the tubing every two weeks with new is recommended by NJH. Throw out or recycle the old tube. Nice that you are a performer. I was a singer growing up and performed. Now my bronchiectasis has affected my voice and I can no longer sing. I have to whistle if I feel the urge!
I believe the tubing is easier to remove when the machine has just run and everything is warm
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2 ReactionsThanks for the tip (pardon the pun!) I have been pulling and twisting it. (it's a good work out for my arms, so it ain't all bad!) I do run the machine for several minutes to dry the tubing out. But, I've been leaving it connected since I use it so often. Will remove from now on..thanks! I am so sorry about your voice. Knock on wood, mine is still holding up!
Ditto. I was told the color was not important as definition of exacerbation. My color is varied - light yellow, regular yellow, green, light brown etc. Clear is usually post nasal drip related. For me an exacerbation means I can't walk far(many steps) in 6 minutes (the 6 min.walk test) due to shortness of breath, fatigue etc. I do that test off and on to see if I am stable, improving, or deteriorating. I know my fastest speed and how many steps that is equal to. I do it in the house.
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1 ReactionI agree. I was going to make that comment but you're on top of it. The tubes I ordered this week don't have the wing tips on them--they are harder to remove.
Good luck @equanimous.
Dulwich! You are brilliant! It worked like a charm. Thank you. 😊👍😊
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2 ReactionsOne of my best friends is an ID doc, and he told me that many (older) people who have died had MAI in their lungs. They died of something else, and never knew they had MAI.
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3 ReactionsQuality of life until the end is most important to me
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2 Reactions@dorma:l had been diagnosed MAC and bronchiectasisend of last year.I had taken the 3 antibiotics since.My doctor ordered sputum culture every month for me.She said after 12 months continuous culture negative of NTM,I could be concerned cured .Did your doctor ordered sputum cultures for you?
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