1. < MAC & Bronchiectasis

No symptoms- do I have to be treated?

Posted by reneeplus6 @reneeplus6, Feb 5, 2018

I'm headed for my third Bronch on Thursday to try and figure out what to do next. Let's see if I can make a long story short. I should mention I'm 53 and otherwise in very good health.
Twice I've gone in for Bronchoscopies (due to strange ongoing coughs) and discovered the H-flu bacteria. Cough goes away with the treatment for H-flu. The last bronch 18 months ago also revealed MAC. I took the 3 antibiotic cocktail for one year. We stopped at a year as it brought on a strong depression bordering on suicidal thoughts. However, now my follow up CT scans show increased opacifciation and larger nodules.
I continue to feel great- no cough, tiredness, minimal mucus (but I also have allergies), no fever. I'm trying to figure out what happens if we do nothing- the best answer I get from my pulmonologist is that, if it eventually has to be cut out, it will be a bigger problem. I also have an appt with infectious disease in a couple weeks to get their take on it.
My only treatment right now is my acupuncturist who's treated me for several years for over all health. I guess my question is- if I tested positive for MAC but have no symptoms, do I have to be treated with medication?

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boomerexpert | @boomerexpert | Feb 13, 2018
In reply to @tdrell "All....I asked the ID doctor at NJH Re Nitric Oxide therapy for NTM treatment when I..." + (show)
@tdrell

All....I asked the ID doctor at NJH Re Nitric Oxide therapy for NTM treatment when I saw her a week ago. She brushed it off saying.....no proof of effectiveness.
Another question I was supposed to ask had to do Re cleaning Acapella equipment.
Soak 4 pieces in soapy tap water then rinse with water boiled for ten minutes.
Tdrell

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I think it depends on how far along in disease progression the person is...

REPLY
tdrell | @tdrell | Feb 13, 2018
In reply to @tdrell "@reneeplus6 .....everyone’s situation is so unique.....I am a firm believer and practice getting 2nd and 3..." + (show)
@tdrell

@reneeplus6 .....everyone’s situation is so unique.....I am a firm believer and practice getting 2nd and 3 rd if necessary opinion when indicated.Mayos
In Minnesota and National Jewish in Denver are two of the specialists in NTM.
In my medical journey with a now 3 year old cough without weight loss or fevers but MAC from a bronchoscope 18 months ago.....here is where I am at
.....just returned from one year follow up at NJH in Denver....met again with pulmonologist and ID DR who saw me one year ago.
......in spite of single sputum cultures growing bizarre bacteria.....my lungs are not infected with them...they land in there due to my silent aspiration from my gastric reflux which is compounded by my obesity and other factors listed.
Last year’s laryngoscopy revealed I have Vocal Cord dysfunction which is exacerbated by my acute allergic rhinnorherea ( all that continuous mucus dripping onto Vocal Cords)
I am allergic to molds but local allergist did not want to desensitize me cause the cardiac beta blocker I take might not allow adrenaline to work if I have an anaphylactic reaction....pulmonologist said go ahead.I should also be rinsing my nose out with saline washes.

I had one session with Speech Pathologist to learn exercises for cough minimization.....will have repeat in future.

The sleep obstruction apnea which was found on the bronchoscopy and confirmed by a sleep study and is being treated with CPAP has a role in all of this.
Repeat from a year ago CAT scan shows no bronchietasis....nothing new except bronchial wall thickening which is caused by the stomach contents getting in the lungs.
I asked both doctors what do I tell the local ID doctor who is Itching to treat me with the big 3 antibiotics.
“Tell him that the standard of care is to grow the bacteria in 3 serial cultures with sufficient colonization.....and that the CAT scan show active infection”
None of which I have.
Again to repeat Reneeplus6....get other valid expert opinions....be sure all bases covered......best of luck. Tdrell

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@windwalker....thanks for suggestion....have been on Singulaire for years. I also am on 24 hour Allegra....benedryl 25 mg at sleep time....flonase nasal spray....as well as a generic anti histamine nose spray Azelestine which the Pharm vultures charge $100 for 50 days. NJH said to see if nasal irrigation will help so I don’t have to use Azelestine.....am not adding on the nasal irrigation or the Aerobika til I am assured ear infection is gone.
How is your jaw pain..?
Terri d

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 19, 2018
In reply to @tdrell "@reneeplus6 .....everyone’s situation is so unique.....I am a firm believer and practice getting 2nd and 3..." + (show)
@tdrell

@reneeplus6 .....everyone’s situation is so unique.....I am a firm believer and practice getting 2nd and 3 rd if necessary opinion when indicated.Mayos
In Minnesota and National Jewish in Denver are two of the specialists in NTM.
In my medical journey with a now 3 year old cough without weight loss or fevers but MAC from a bronchoscope 18 months ago.....here is where I am at
.....just returned from one year follow up at NJH in Denver....met again with pulmonologist and ID DR who saw me one year ago.
......in spite of single sputum cultures growing bizarre bacteria.....my lungs are not infected with them...they land in there due to my silent aspiration from my gastric reflux which is compounded by my obesity and other factors listed.
Last year’s laryngoscopy revealed I have Vocal Cord dysfunction which is exacerbated by my acute allergic rhinnorherea ( all that continuous mucus dripping onto Vocal Cords)
I am allergic to molds but local allergist did not want to desensitize me cause the cardiac beta blocker I take might not allow adrenaline to work if I have an anaphylactic reaction....pulmonologist said go ahead.I should also be rinsing my nose out with saline washes.

I had one session with Speech Pathologist to learn exercises for cough minimization.....will have repeat in future.

The sleep obstruction apnea which was found on the bronchoscopy and confirmed by a sleep study and is being treated with CPAP has a role in all of this.
Repeat from a year ago CAT scan shows no bronchietasis....nothing new except bronchial wall thickening which is caused by the stomach contents getting in the lungs.
I asked both doctors what do I tell the local ID doctor who is Itching to treat me with the big 3 antibiotics.
“Tell him that the standard of care is to grow the bacteria in 3 serial cultures with sufficient colonization.....and that the CAT scan show active infection”
None of which I have.
Again to repeat Reneeplus6....get other valid expert opinions....be sure all bases covered......best of luck. Tdrell

Jump to this post

@tdrell, sinus irregation works for me. I hope it does for you also.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 19, 2018
In reply to @tdrell "All....I asked the ID doctor at NJH Re Nitric Oxide therapy for NTM treatment when I..." + (show)
@tdrell

All....I asked the ID doctor at NJH Re Nitric Oxide therapy for NTM treatment when I saw her a week ago. She brushed it off saying.....no proof of effectiveness.
Another question I was supposed to ask had to do Re cleaning Acapella equipment.
Soak 4 pieces in soapy tap water then rinse with water boiled for ten minutes.
Tdrell

Jump to this post

@tdrell, Sheesh, girl! You have really been through it! I know te masks can be uncomfortable, but theere is one you can buy at a paint store called P95. It has a filtered breathing gizmo in the front. You can breathe nicely and it does not get sweaty. It blocks out over 95% of particulate matter including bacterias. A pk of two runs about $6.99.

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