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No symptoms- do I have to be treated?

MAC & Bronchiectasis | Last Active: Feb 19, 2018 | Replies (24)

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@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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Replies to "@reneeplus6 .....everyone’s situation is so unique.....I am a firm believer and practice getting 2nd and 3..."

I too have acid/pepsin causing the damage to my bronchial tubes. Have just started a strict acid reflux reduction diet on my own initiative, and have to stay upright for 3 hours after every meal. I have more energy and cough less. I have to squeeze the postural drainage for bronchiectasis into my day, but that is working to clear out a lot of mucus. After 14 months with 3 antibiotic treatment two years ago, there has been no more sign of MAC.

I'm glad to find this forum and hope I can contribute information that helps.

@egayle187 .....glad you are doing well...what were your symptoms prior to treatments? Cough and lack of energy’s?
How many sputum specimens showed the MAC?
Were did you get medical care? Tdrell

I wish and hope I could/can at least say my CT was stable

@tdrell, Hi Terri. That was excellent advice for Renee. As for you, have you ever been put on the medivation 'Singulair' for the rhinitis? I was put on it many years ago and it made a world of difference for me. I still take it

@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

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