1. < MAC & Bronchiectasis

No symptoms or health problems

Posted by mholm @mholm, Jan 12 10:13pm

I was diagnosed with MAC and B. after pneumonia but have no symptoms or health issues. I am 71, active and have no breathing problems so I'm reluctant to start a year of antibiotics when MAC often comes back. Would appreciate hearing from anyone similar. Have been told asymptomatic people tend to be tall, thin, female over 60. Gardeners working with dirt where MAC microbes reside.

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

pacathy | @pacathy | Jan 23 7:23am
In reply to @jnmy "@snoei I’m glad my post was helpful. I learned about NAC through this site. N-Acetyl-L-Cysteine is..." + (show)
@jnmy

@snoei I’m glad my post was helpful. I learned about NAC through this site.

N-Acetyl-L-Cysteine is an amino acid. I mentioned it to my pulmonologist.
People recommend 600 mg twice a day and I did start with that amount. I’m not sure if it was a coincidence but my blood pressure, which is typically on the low side of very good, got much lower especially the diastolic number.

I just decided to stop taking NAC with supper and now only use the 600 mg with breakfast. I may try it again with supper but I seem to be doing ok with the mucus clearance. I must clear my lungs twice a day.

You can purchase in stores or through Amazon. I buy Natural Factors brand because it has a third party company check on quality. There are many excellent brands.
Hope that helps.

I don’t nebulize with saline. I was told I didn’t need to but I’m planning to bring this up again at my next appointment. I think it would be especially helpful if (when) I experience another exacerbation with an infection.

Sue and others have mentioned that nebulizing helps our lungs ward off NTM infections. Since we may have similar presentations of this disease, I'm curious.. Has your lung specialist mentioned nebulizing saline to you?

Jump to this post

My pulmonologist suggested I neb the 7% NS a few times/week this winter. I don’t have MAC, but last winter I had several viral respiratory infections (young grandchildren). He thought trying it in an attempt to decrease infections worthwhile.

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 23 12:54pm
In reply to @pacathy "My pulmonologist suggested I neb the 7% NS a few times/week this winter. I don’t have..." + (show)
@pacathy

My pulmonologist suggested I neb the 7% NS a few times/week this winter. I don’t have MAC, but last winter I had several viral respiratory infections (young grandchildren). He thought trying it in an attempt to decrease infections worthwhile.

Jump to this post

It has worked for me. I am at once a week now per my pulmonologist after our last visit. So far it has kept the bugs at bay for over 2 years - even when doing Grandma daycare for sick kids!

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1 reply
jill6063 | @jill6063 | Jan 24 6:02am
In reply to @sueinmn "It has worked for me. I am at once a week now per my pulmonologist after..." + (show)
@sueinmn

It has worked for me. I am at once a week now per my pulmonologist after our last visit. So far it has kept the bugs at bay for over 2 years - even when doing Grandma daycare for sick kids!

Jump to this post

Hi Sue -
Am I correct that you neb once per week? I’m on 2x per week with no symptoms, and assumed I may have to do this forever. Is there such a thing as “graduating” to fewer at some point (assuming I never develop symptoms)? If so, I would be ecstatic to think of that possibility! I’m heading to National Jewish in April, so am eager to learn more.

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2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 24 9:17am
In reply to @jill6063 "Hi Sue - Am I correct that you neb once per week? I’m on 2x per..." + (show)
@jill6063

Hi Sue -
Am I correct that you neb once per week? I’m on 2x per week with no symptoms, and assumed I may have to do this forever. Is there such a thing as “graduating” to fewer at some point (assuming I never develop symptoms)? If so, I would be ecstatic to think of that possibility! I’m heading to National Jewish in April, so am eager to learn more.

Jump to this post

Let's begin with - everyone is different, so your advice may vary. And many other here would be more conservative, and probably their doctors as well, but pulmonologist is very tuned in to each patient and tailors their plans accordingly.

This is a practice worked out over 2 years with my pulmonologist - I gradually reduced my nebs but used asthma meds daily, was still able to do daily airway clearance, stayed symptom-free and my CT scans are stable with no evidence of infection, only bronchiectasis and scarring from previous infections.

The caveat is - the minute I get respiratory symptoms (such as when I got Covid in September) I jump right back to twice daily nebs and airway clearance, adding a budesonide neb if I don't improve within 48 hours.

Do you also have a local pulmonologist you might consult about cutting back gradually based on the overall severity of your situation?

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jill6063 | @jill6063 | Jan 24 1:27pm

Hi Sue -
Thanks so much. So when you say daily airway clearance, are you meaning something other than nebulizing with 7%? You seem to differentiate between the two?

I am under the care of an excellent pulmonologist, but am heading to National Jewish Health in April for belts and suspenders and to make sure I am doing absolutely everything I can to keep myself healthy and hopefully stave off worsening of my bronchiectasis (which is mild) and kicking the MAC. Another benefit of becoming a patient at NJH is that I can use their lab, which quantifies the bacteria to give me an indication of my progress instead of the binary “positive or negative” result I get right now using Labcorp. It’s a little complicated because I live in NJ but my pulmonologist is in NYC so I can’t use their lab unless I hoofed it into the city every month. My results are so up and down that it’s making me crazy. I have created a veritable fortress against MAC, so I want to know if it’s still getting in (and if so, how), or whether there are pockets of gunk I am not effectively clearing (and if so how I can improve my technique).

Thanks so much!

REPLY
2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 24 10:32pm
In reply to @jill6063 "Hi Sue - Thanks so much. So when you say daily airway clearance, are you meaning..." + (show)
@jill6063

Hi Sue -
Thanks so much. So when you say daily airway clearance, are you meaning something other than nebulizing with 7%? You seem to differentiate between the two?

I am under the care of an excellent pulmonologist, but am heading to National Jewish Health in April for belts and suspenders and to make sure I am doing absolutely everything I can to keep myself healthy and hopefully stave off worsening of my bronchiectasis (which is mild) and kicking the MAC. Another benefit of becoming a patient at NJH is that I can use their lab, which quantifies the bacteria to give me an indication of my progress instead of the binary “positive or negative” result I get right now using Labcorp. It’s a little complicated because I live in NJ but my pulmonologist is in NYC so I can’t use their lab unless I hoofed it into the city every month. My results are so up and down that it’s making me crazy. I have created a veritable fortress against MAC, so I want to know if it’s still getting in (and if so, how), or whether there are pockets of gunk I am not effectively clearing (and if so how I can improve my technique).

Thanks so much!

Jump to this post

Hello, nebulizing 7% saline or exercising is Step one in airway clearance, it gets the mucus moving. Step 2 is "getting the gunk out" using any number of techniques - using the Aerobika, active breathing, huff coughing, postural drainage, using a percussion vest...
Here is an excellent video that covers why and how:


I am curious as to whether you are taking antibiotics for MAC, and if so for how long?

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1 reply
blm1007blm1007 | @blm1007blm1007 | Jan 24 10:39pm
In reply to @jill6063 "Hi Sue - Am I correct that you neb once per week? I’m on 2x per..." + (show)
@jill6063

Hi Sue -
Am I correct that you neb once per week? I’m on 2x per week with no symptoms, and assumed I may have to do this forever. Is there such a thing as “graduating” to fewer at some point (assuming I never develop symptoms)? If so, I would be ecstatic to think of that possibility! I’m heading to National Jewish in April, so am eager to learn more.

Jump to this post

Hi Jill - Glad to hear you were able to secure an appointment at National Jewish. A couple of us have stayed in the Cherry Creek area which is approximately ten minutes away from NJH.
I enjoyed my stay at the Marriot Residence Inn, (they give a discount for those going to NJH) if you are considering looking for that type of accommodations. Whole Foods Market is practically around the corner and Sprouts is down the street from the Marriot. Good restaurant in the area.
Barbara

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jill6063 | @jill6063 | 6 days ago

Thank you, Barbara! I was going to ask for recommendations on the forum. So I assume I can uber back and forth then, which would mean I could get by without renting a car.

I’ll look into the Marriott. Sounds like a great choice!

REPLY
bayarea58 | @bayarea58 | 6 days ago
In reply to @jill6063 "Hi Sue - Thanks so much. So when you say daily airway clearance, are you meaning..." + (show)
@jill6063

Hi Sue -
Thanks so much. So when you say daily airway clearance, are you meaning something other than nebulizing with 7%? You seem to differentiate between the two?

I am under the care of an excellent pulmonologist, but am heading to National Jewish Health in April for belts and suspenders and to make sure I am doing absolutely everything I can to keep myself healthy and hopefully stave off worsening of my bronchiectasis (which is mild) and kicking the MAC. Another benefit of becoming a patient at NJH is that I can use their lab, which quantifies the bacteria to give me an indication of my progress instead of the binary “positive or negative” result I get right now using Labcorp. It’s a little complicated because I live in NJ but my pulmonologist is in NYC so I can’t use their lab unless I hoofed it into the city every month. My results are so up and down that it’s making me crazy. I have created a veritable fortress against MAC, so I want to know if it’s still getting in (and if so, how), or whether there are pockets of gunk I am not effectively clearing (and if so how I can improve my technique).

Thanks so much!

Jump to this post

@jill6063 I sense I am only a few steps behind you in terms of a trip to NJH. I got all my approvals and am just waiting to schedule. You mention April for your appt., does that mean the wait time for an appt was about 3-4 months? It’s been such a slow process getting on their books I am just chomping at the bit to get there!

REPLY
1 reply
bayarea58 | @bayarea58 | 6 days ago
In reply to @sueinmn "Hello, nebulizing 7% saline or exercising is Step one in airway clearance, it gets the mucus..." + (show)
@sueinmn

Hello, nebulizing 7% saline or exercising is Step one in airway clearance, it gets the mucus moving. Step 2 is "getting the gunk out" using any number of techniques - using the Aerobika, active breathing, huff coughing, postural drainage, using a percussion vest...
Here is an excellent video that covers why and how:


I am curious as to whether you are taking antibiotics for MAC, and if so for how long?

Jump to this post

@jill6063 like Sue I am also curious if you are taking antibiotics, which, and for how long.

REPLY
1 reply
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