No symptoms- do I have to be treated?

Hi @ reneeplus6 I think it depends on the CT scan, if it is rapidly getting worse(cavities , nodules), if its bad and getting worse they will treat it, but it also depends on how you coped with the medication. There are new meds like inhaled Amakacin which will be available soon hopefully and have less side effects. Did your depression stop when you came off the meds? Often knowing you have MAC causes anxiety etc also.. There is so much unknown about MAC but research is being done so hopefully we will know more soon. Most doctors only operate as a last choice.
Its is great that you have no symptoms. Alot of us seem to have allergies also, I think that means more mucus for the bugs to grown in us.
Hope all goes well for you.

@reneeplus6
My personal take is the get an infectious disease opinion and maybe a third opinion at a Mayo or somewhere.
It's a bit concerning that the ct is worse but having no symptoms is very encouraging.
Also would wait to see if a couple of Mac tests in a row come back positive.
I was positive to mycobacteria abcessus for a year with no treatment and have turned negative the last year. My doctors chose a wait and see approach.
I'm sure others will chime in here.
Take care
Shari

I continue to hope that the nitric oxide and other studies will come soon

@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

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

FYI: Teleconference on bronchiectasis with Dr. Tim Aksamit of the Mayo Clinic...https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/66/Event-Alert-Second-Town-Hall-Teleconference-A-Dive-into-Bronchiectasis-and-NTM

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.

@boomerexpert Thanks for the info. Unfortunately I will be working that afternoon and won't be able to participate. I'm hoping whoever is attending will share what they learn from the town hall conference on this site.

@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

Thanks all for the information and encouragement!