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Wed, Nov 13 9:00am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@kathyhg Sorry you are experiencing nausea. You are wise to have regular checks with a GI specialist. I have Bronch, and I am colonized with m. Abscessus in sinuses as well as lungs. I’m on Gentamicin as a daily maintenance antibiotic, taken as an inhalant. Have not had to start “Big 3”, by God’s grace and daily airway clearance. My docs are at Stanford.

I have significant, periodic, bouts of GI pain, irregularities, and at times nausea. Been scoped from both directions, all they see is some areas where bleeds have healed, and diverticulosis. So they’ll Diagnose it as a bout of “gastroenteritis”. The symptoms are becoming more frequent, and the bouts last longer: the last one was 3 months!

After years of trouble with constipation, I take Miralax daily, and it has been a life-changer to have a daily BM! Who knew what joy?? HA!

They checked me for ciliary dyskinisia, and I don’t have it. They’ve done genetic testing for CF, and I do have a questionable result so they will explore that further soon.

The ENT accidentally hit a nerve during my July Endoscopy, and I had 4 weeks of facial pain….and non-stop nausea. The doctor reminded me sometimes pain can cause nausea. It passed.

I still work full time, I was a college athlete, still exercise daily and enjoy grandbabies, the best medicine of all. Would have never dreamt I’d be alive after being deathly ill in 2015-2016.

I share all this in hopes of helping you or anyone else hang on, have hope, and in hopes we can share clues to help our doctors put the pieces together and make things easier for those who come after us. Blessings, Brenda

Sat, Nov 2 3:16pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@rits yes I have had aspergillus show up as well. I’ve never had a bronchoscopy

Sat, Nov 2 1:28pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@rits Hello, I had Mucor show up in a sputum sample too, but doc thinks it was just a contaminant (since I’m not deathly ill). Let’s stay in touch.

Fri, Oct 11 1:34pm · Percussion vest in MAC & Bronchiectasis

@gj53 i do find the Afflovest helpful, and it is portable.

Thu, Sep 26 8:54am · Pneumococcal Vaccinations against pneumonia in MAC & Bronchiectasis

@bibes YOU GO GIRL! still walking 2 miles a day at age 85?? You will be my daily inspiration when I don’t wanna go to the gym and I don’t want to do my airway clearance! God Bless and keep you.

Wed, Sep 11 9:23pm · Extreme fatigue with MAC in MAC & Bronchiectasis

@migizii Sleep is the ball game for me! Especially when trying to work or watch grandkids!

Tue, Sep 3 8:51pm · Anyone used Tea Tree Oil in a nasal rinse for chronic sinusitis? in MAC & Bronchiectasis

Hello @jenniferhunter @ethanmcconkey @fdixon63 Thank you for the tag re: sinus issues. I culture m. Abscessus (fast grower), MRSA, and Acintobacter Baumanii in my sinuses regularly. My ENT, ID doctor & Pulmonologist at Stanford are all thrilled with how well I’m doing since beginning using the Navage Sinus rinse device. I add my Gentamicin antibiotic and Budesonide to it, as inhalants. (This spares my GI tract a little, since I don’t have to take them orally.) I was scheduled for a 3rd & final sinus surgery last January, and we were able to postpone that! God has been merciful to me so far, and I stand in humble gratitude. I hope this information will help others!