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Feb 7, 2019 · first doctor visit in MAC & Bronchiectasis

How did you treat your allergies? Did you do allergy shots? Your history sounds similar to mine. I did shots 2 years once and one year another time – second time was cut short. These days I’m very interested in gut health, food sensitivities, etc. thx and wishing you good health.

Jan 9, 2019 · Specialist in North Carolina in MAC & Bronchiectasis

@kwb1970 @macjane @margiebanks I see Dr Govert in pulmonologist & Dr Jason Stout in infectious disease at Duke. Both are phenomenal & very busy and connected at Mayo. Dr Stout is considered to be the state expert on MAC.

Jan 3, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi there, I’ll make it a year in March. Definitely have days but all in all I’m doing ok. I’m also relatively young… vitamins & probiotics are essential.

Sep 18, 2017 · Participant summary of NTM webinar 9/14 with Dr. Kevin Fennelly in MAC & Bronchiectasis

Thanks so much for the info – it means a lot to those of us unable to make it

Sep 18, 2017 · What's your organism? Has anyone had M fortuitum or chelonae? in MAC & Bronchiectasis

@winwindwalker you are so kind to ask! Well, he said I’m “interesting, and you never want to be interesting to a doctor”. My cultures in fact grew MAC. He added I did grow a few colonies of M. Chelonae but not much and that my + cultures the year before for M fortuitum were likely a fluke, despite that those cultures were what got me on this path. He requested repeat cultures to check for other organisms and to add alone nebs. He also suggested cutting my azithromycin dose in 1/2 from the 500 my pulmonologist put me on (a dose backed up by a study out of Korea a few years ago – because rifampin metabolizes so many drugs more rapidly inc. clarithromycin), he feels strongly there is. I good evidence that rifampin metabolizes azithromycin. So maybe that will help energy? Looking forward to seeing if saline helps cough production. He doesn’t think the big 3 are a reason not to have a baby which was a big deal for me – I was really afraid of that possibility being taken away. He is in communication w MDs at National Jewish so…. basically wait and see and keep on keeping on for now.
How are you & how did you fare during Irma?

Sep 10, 2017 · What's your organism? Has anyone had M fortuitum or chelonae? in MAC & Bronchiectasis

Tdrell, that is a good question. I have assumed that because my infectious disease guy is known in the community as the state “expert” and being in a high MAC area that the answer was yes but I’ve never asked – I will tomorrow, thank you! I’ve been so chronically ill for the last 3.5 years I am tired of playing around – I wish I’d been even less patient:)

Sep 10, 2017 · What's your organism? Has anyone had M fortuitum or chelonae? in MAC & Bronchiectasis

Hello all, I’ve been reading away and am so grateful to be a part of such a great group. I have been to 2 university clinics, first UNC and now Duke as a second opinion. 18 mos ago I was told I had M. Fortuitum which is a different tx than big 3, and Duke told me MAC and put me on the big 3. Following guidance from the group I looked closely at my last cultures and they show MAC:”presumptive M chelonae”. Is anyone familiar w/ their organism labeled presumptive? It’s close to the M fortuitum… ive been seeing a respected pulmonologist but have a second opinion w infectious disease tomorrow. Looking forward to the info but Leary – he’s supposed to be the state expert & poo poo’d my initial
Diagnosis. It doesn’t affect everyone but i was so tired I had trouble gettting up in the am, needed naps all the time. I’ve improved on big 3 but feel I’ve plateaued and am worried the abtibx combo is a little off re: getting the umbrella tx instead of for specific MAC organism. Am I making sense? While so helpful, knowing this small detail & motivation to be better I’ve been pretty anxious.
Thx!
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