1. < MAC & Bronchiectasis

Celebrating an antibiotic-free year

Posted by thumperguy @thumperguy, Oct 10, 2020

And I’m convinced 7% nebulized saline did the trick. (Accompanied by percussion vest vibration) And this forum is the place I learned of “The 7% Solution.“ “Don the indebted.”

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Jane S. Brown | @macjane | Nov 14, 2020
In reply to @windwalker "Hi Heather! Yeah, cold air brings on bronchial spasms for me too. My airways just close..." + (show)
@windwalker

Hi Heather! Yeah, cold air brings on bronchial spasms for me too. My airways just close up and cause me to cough and cough. I plan on using a mask whenever I am out walking the dog this winter. That way, the air I breathe in will be pre-warmed, How have you been doing, and what have you been doing?

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I noticed that after going inside early evening I started to gasp somewhat but after resting it slowed down in doctor’s office.

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alleycatkate | @alleycatkate | Nov 14, 2020

@windwalker @heathert Terri and Heather.... I am so sorry to read that you are both having difficulties with infection again. I am wishing you both the best. Good luck. <3 Kate

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2 replies
heathert | @heathert | Nov 14, 2020
In reply to @alleycatkate "@windwalker @heathert Terri and Heather.... I am so sorry to read that you are both having..." + (show)
@alleycatkate

@windwalker @heathert Terri and Heather.... I am so sorry to read that you are both having difficulties with infection again. I am wishing you both the best. Good luck. <3 Kate

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Hi Kate thank you so much, I have kind of known for 6 months as my cough returned but it has been confirmed, the pills are just so much fun! Take care Heather

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1 reply
migizii | @migizii | Nov 14, 2020
In reply to @sueinmn "Both - I am in control 90% of the time, clearing during/after nebbing. But occasionally I..." + (show)
@sueinmn

Both - I am in control 90% of the time, clearing during/after nebbing. But occasionally I still get coughing fits - usually it feels like a mucus plug is caught in my throat & I stop what I am doing & huff cough until I get rid of it.

@kathyhg - I carry water & "Gin Gin" hard ginger candies - both help to stop a cough when I am out & about unless I have that "stuck" feeling. When I do, I usually excuse myself & cough it out, often in my car. Regular physical activity helps me get the mucus out. This sounds really crazy, because cold air is usually a problem for me, but getting out in the cold and moving help clear my lungs when I go back into the warm. Even a short walk helps.
Sue

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@migizii. As a patient who has difficulty removing mucus, the twice daily nebulizing/vest therapy is the primary way I have to get any mucus up. During the day, is usually feel like something is stuck in my throat, have a dry cough, and on “lucky” occasions can cough up mucus. However, the very fortunate part for me is that I have not faced a MAC infection yet. I don’t know why, it I feel blessed. From what I read here, the 7% saline maybe the key.

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2 replies
alleycatkate | @alleycatkate | Nov 15, 2020
In reply to @migizii "@migizii. As a patient who has difficulty removing mucus, the twice daily nebulizing/vest therapy is the..." + (show)
@migizii

@migizii. As a patient who has difficulty removing mucus, the twice daily nebulizing/vest therapy is the primary way I have to get any mucus up. During the day, is usually feel like something is stuck in my throat, have a dry cough, and on “lucky” occasions can cough up mucus. However, the very fortunate part for me is that I have not faced a MAC infection yet. I don’t know why, it I feel blessed. From what I read here, the 7% saline maybe the key.

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@migizii ...Just read your post and I'm not sure if you know that 'something stuck in your throat' (usually feeling like a lump) is a classic symptom of acid reflux or silent reflux. Not sure in your case but thought I would mention it. Kate

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1 reply
ellenn | @ellenn | Nov 15, 2020
In reply to @heathert "@windwalker yes I know how you feel with fatigue, I was also only doing the morning..." + (show)
@heathert

@windwalker yes I know how you feel with fatigue, I was also only doing the morning saline and started coughing alot, I have been rediagnosed with MAI in my lower left lobe (wondering if thats the last lobe saline reaches). I am starting the meds again(what a pain) the MAI has been tested for the big 3 and is susceptible to them, thank goodness, I asked about other drugs but she said they have worse side effects, I mentioned they may be faster but she wasnt keen. Sorry its not good news, hope you are feeling better soon.
Take care
Heather

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Heather,
I was diagnosed 3 years ago with cavitary disease and MAI Avium. I had surgery a year ago to remove parts of my right lungs with cavities and infections but have never really recovered. The surgeon said that not enough of the antibiotics get to the lungs to treat that and bronchiectasis. I still have MAC in 1 out of 3 sputum cultures.
I have VERY high CRP (inflammation) #s so some infection is raging.
I have terrible allergies to antibiotics and am really afraid to start the protocol. I'm so afraid when I read the side effects and the 2 years needed to possibly put MAC in remission.
Can you share your experience and knowledge with me?
Thanks,
Ellen

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 15, 2020
In reply to @alleycatkate "@windwalker @heathert Terri and Heather.... I am so sorry to read that you are both having..." + (show)
@alleycatkate

@windwalker @heathert Terri and Heather.... I am so sorry to read that you are both having difficulties with infection again. I am wishing you both the best. Good luck. <3 Kate

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Thank you Kate. I don't think I have a mac or pseudo infection, just something trying to get me. I went back on the toby just in case.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 15, 2020
In reply to @ellenn "Heather, I was diagnosed 3 years ago with cavitary disease and MAI Avium. I had surgery..." + (show)
@ellenn

Heather,
I was diagnosed 3 years ago with cavitary disease and MAI Avium. I had surgery a year ago to remove parts of my right lungs with cavities and infections but have never really recovered. The surgeon said that not enough of the antibiotics get to the lungs to treat that and bronchiectasis. I still have MAC in 1 out of 3 sputum cultures.
I have VERY high CRP (inflammation) #s so some infection is raging.
I have terrible allergies to antibiotics and am really afraid to start the protocol. I'm so afraid when I read the side effects and the 2 years needed to possibly put MAC in remission.
Can you share your experience and knowledge with me?
Thanks,
Ellen

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Hello Ellen. I see that you just recently joined our group. Welcome! I am sorry to read that the lung surgery did not fix the problems with your lungs. Did you have it done at NJH by any chance? Here is a list of other group members that also have dealt with MAI. You can go to their profiles and read all of their posts, or you can reach out to them and ask questions. Here they are:@brigby, @jammer, @irene5, @poodledoc, @Cathln. Maybe after exchanging thoughts on treatment plans with these other members; you can come to a decision on how to proceed for yourself. Read and learn all that you can about your disease. Knowledge is power!

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 15, 2020
In reply to @heathert "@windwalker yes I know how you feel with fatigue, I was also only doing the morning..." + (show)
@heathert

@windwalker yes I know how you feel with fatigue, I was also only doing the morning saline and started coughing alot, I have been rediagnosed with MAI in my lower left lobe (wondering if thats the last lobe saline reaches). I am starting the meds again(what a pain) the MAI has been tested for the big 3 and is susceptible to them, thank goodness, I asked about other drugs but she said they have worse side effects, I mentioned they may be faster but she wasnt keen. Sorry its not good news, hope you are feeling better soon.
Take care
Heather

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Awe crap Heather!!! I am sorry sweetie. You are a soldier, and you will kick it's but again, I just know it!Sending you hugs, love, and healing vibes.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 15, 2020
In reply to @heathert "Hi Kate thank you so much, I have kind of known for 6 months as my..." + (show)
@heathert

Hi Kate thank you so much, I have kind of known for 6 months as my cough returned but it has been confirmed, the pills are just so much fun! Take care Heather

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Heather, do you know what exactly you have been tested positive for? Is it mac, mai, or pseudo?

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