1. < MAC & Bronchiectasis

MAC Question

Posted by thumperguy @thumperguy, Aug 22, 2020

Anyone with MAC been able to eliminate or control it sufficiently with 7% saline to ditch the antibios?

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

migizii | @migizii | Aug 27, 2020
In reply to @windwalker "Shooie, originally, it was the opinion to have a 5 yr interval between ct scans because..." + (show)
@windwalker

Shooie, originally, it was the opinion to have a 5 yr interval between ct scans because they are very powerful and can disrupt and damage cells. From what I have heard from others is that ct radiation levels have been lowered and now there is a 2 yr interval. I have not looked it up yet to see if that is true, but I will. Your dr may be thinking that a regular sputem test is unessessary because mac is a slow grower. I think it is important to get a sputem test every yr or sooner if you have a bad exacerbation. Reason being; you may have pseudomonas growing in your lungs or some other bad organism. We are at risk to other 'bugs' infecting us due to having bronchiectasis. I would stay on top of your lung health. I chose not to treat mine back in 2005 and have permanently lost a lot of lung function I think as a result of my decision.

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@migizii I have a question and wonder if someone is able to offer some insight. I see my pulmonologist yearly and my bronchiectasis has been stable (no exacerbations). However, he has not ordered a sputum test for the past two years and my CT scan states atypical microbacterial infection noted (as in previous scan). Obviously, I wasn’t aware enough to know what was going on - so I didn’t ask about it at my appointment. I continue to feel okay, but your comment about losing lung function has me concerned. Anyone think I need to pursue this?

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2 replies
irene5 Irene Estes | @irene5 | Aug 28, 2020
In reply to @migizii "@migizii I have a question and wonder if someone is able to offer some insight. I..." + (show)
@migizii

@migizii I have a question and wonder if someone is able to offer some insight. I see my pulmonologist yearly and my bronchiectasis has been stable (no exacerbations). However, he has not ordered a sputum test for the past two years and my CT scan states atypical microbacterial infection noted (as in previous scan). Obviously, I wasn’t aware enough to know what was going on - so I didn’t ask about it at my appointment. I continue to feel okay, but your comment about losing lung function has me concerned. Anyone think I need to pursue this?

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@migizii The mere fact that you have an atypical mycobacterium infection might have prompted your pulmonologist to recommend you see an infectious disease doctor. irene5

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2 replies
migizii | @migizii | Aug 29, 2020
In reply to @irene5 "@migizii The mere fact that you have an atypical mycobacterium infection might have prompted your pulmonologist..." + (show)
@irene5

@migizii The mere fact that you have an atypical mycobacterium infection might have prompted your pulmonologist to recommend you see an infectious disease doctor. irene5

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@migizii...He didn’t recommend any further intervention...continue nebulizing with albuterol and 7%saline with smart vest twice a day and see him next year...He is from Mayo Pulmonology.

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1 reply
migizii | @migizii | Aug 29, 2020
In reply to @migizii "@migizii...He didn’t recommend any further intervention...continue nebulizing with albuterol and 7%saline with smart vest twice a..." + (show)
@migizii

@migizii...He didn’t recommend any further intervention...continue nebulizing with albuterol and 7%saline with smart vest twice a day and see him next year...He is from Mayo Pulmonology.

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@irene5 thanks so much for your input😊

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shooei | @shooei | Aug 29, 2020
In reply to @windwalker "Shooie, originally, it was the opinion to have a 5 yr interval between ct scans because..." + (show)
@windwalker

Shooie, originally, it was the opinion to have a 5 yr interval between ct scans because they are very powerful and can disrupt and damage cells. From what I have heard from others is that ct radiation levels have been lowered and now there is a 2 yr interval. I have not looked it up yet to see if that is true, but I will. Your dr may be thinking that a regular sputem test is unessessary because mac is a slow grower. I think it is important to get a sputem test every yr or sooner if you have a bad exacerbation. Reason being; you may have pseudomonas growing in your lungs or some other bad organism. We are at risk to other 'bugs' infecting us due to having bronchiectasis. I would stay on top of your lung health. I chose not to treat mine back in 2005 and have permanently lost a lot of lung function I think as a result of my decision.

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Thank you Terri! I will ask for at least a sputum test next visit just to make sure I'm not growing something new.

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thumperguy | @thumperguy | Sep 2, 2020
In reply to @windwalker "Hello Don. I first discovered 7% saline as a treatment back in 2010 when I was..." + (show)
@windwalker

Hello Don. I first discovered 7% saline as a treatment back in 2010 when I was researching lung diseases. The French had been using it successfully as a treatment. I had asked my doctors along the way about it, and they all said "Never heard of it". Finally, when I asked my Mayo doctor about it, he said yes, absolutely lets try that. That was in 2013. By 2014, I tested negative for mac and have ever since. I do not know if it was the saline that pushed that negative result or the antibiotics, or both. I went off of all antibiotics last Spring and now only do the albuterol and saline. My last sputem test from June came back negative. I think that my isolating from covid has also been protecting me from picking up extra germs. I will continue to nebulize the saline indefinitely as I think it is good for my lungs.

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I’m with you Teri. I’m gonna ask pulmo when I see him to order a sputum culture.

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migizii | @migizii | Sep 5, 2020
In reply to @irene5 "@migizii The mere fact that you have an atypical mycobacterium infection might have prompted your pulmonologist..." + (show)
@irene5

@migizii The mere fact that you have an atypical mycobacterium infection might have prompted your pulmonologist to recommend you see an infectious disease doctor. irene5

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Thank you for your response but he did not recommend anything other than my normal protocol...in fact, he never told me this was in the ct scan finding.....I read it in the ct scan findings.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 6, 2020
In reply to @migizii "@migizii I have a question and wonder if someone is able to offer some insight. I..." + (show)
@migizii

@migizii I have a question and wonder if someone is able to offer some insight. I see my pulmonologist yearly and my bronchiectasis has been stable (no exacerbations). However, he has not ordered a sputum test for the past two years and my CT scan states atypical microbacterial infection noted (as in previous scan). Obviously, I wasn’t aware enough to know what was going on - so I didn’t ask about it at my appointment. I continue to feel okay, but your comment about losing lung function has me concerned. Anyone think I need to pursue this?

Jump to this post

Hmmm...I think the fact there is no exacerbation and you feel okay means that even if you are MAC positive, there would be a tendency to not treat.

I am MAC positive (at least I was in December) but without symptoms so my antibiotics were discontinued after 18 months. My ID doc, who consults regularly with NJH, says he reserves the antibiotic therapy as his "big gun" because 1) it is very hard on the body & psyche, and 2) he is afraid of building resistance to the meds. My pulmonologist, who agreed with stopping the meds, will see me soon, and told me via message this week that we will only do a culture or CT if I get serious symptoms again. Otherwise to just assume the MAC is still there, and keep doing what works.

I rely on 7% saline, airway clearance & exercise to keep me healthy and my lungs strong. After 8 months, even in the worst part of my usual asthma/allergy season, I am doing OK so far.
Sue

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