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Posts (102)

Thu, Sep 17 5:08am · Bronchiectasis and Gerd in MAC & Bronchiectasis

@clpc, Hello, you seem to be very aware and informed “up on this”. Thanks for all the good background. To answer your question, my best understanding of what my doctors have told me is there is a high rate of correlation for patients with Bx, MAC, and GERD, and studies indicate in some cases GERD may be the pathway through which Bx begins, esp. when we unknowingly aspirate particles from gut to lung at night. I have GERD, but my docs don’t believe that is why I developed Bx and eventually MAC. Mine is idiopathic, but probably related to childhood pneumonia(s). My understanding is I’ll never be rid of MAC now that it’s set up house in my lungs and sinuses, along with several other bad actors, all of whom are fighting for real estate. But my life is significantly better since diagnosis 5 years ago. My Rx is: regular airway clearance (vest + 7% saline nebulizer + postural drainage for lungs) + Gentamicin & Budesonide inhalants using my Navage device, + exercise + sleep + water. I haven't heard of anyone saying their Bx and MAC were mistaken for GERD. Best of luck & blessings to you, please keep us updated.


@rits Very well explained. I agree. I take Budesonide 2x daily as an inhalant, through my sinus cleansing device called a “Navage.” I hate that I must resort to it, but I suffer in my sinuses, and then my lungs, if I don’t comply. Which mycobacterium sub-species do you have? (I culture m. Abscessus, MAC, MAI.) I also regularly culture Acintobacter and M. Abscessus in my sinuses.

Tue, May 5 12:02pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@windwalker888 Hi Terri! It’s a particularly deadly fungus.

Sun, May 3 5:46pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@rits hi there, your post about Mucor caught my attention. One of my sputum samples returned Mucor a year ago, and the doctor was immediately concerned, but we didn’t pursue anything further since I didn’t have any other symptoms. He is hopeful, and fairly confident it was merely a contaminant. Weird, though, that they did a bronchoscopy on you and tried to go in and find it, and couldn’t. Do you know how many colonies of Mucor you got you cultured?

Thu, Apr 30 7:42pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@windwalker888 @irene5 I too share your thumb pain! Just had another injection it doesn’t keep me awake at night. I severed a major tendon years ago, snow skiing, and had emergency repair surgery then. Now it’s arthritis, for which I have a genetic predisposition. (If it’s not one thing, it’s your mother.)

Tue, Mar 24 10:39am · Ears, Nose, Throat, Arm??? in Infectious Diseases

@deedee2020 Well first off I’d like to say thank you for giving me my new favorite expression, “anywhoodles”. I am sorry to hear you are having these troubling symptoms. Have you done airway clearance for the day, both your lungs and sinuses?

Wed, Mar 11 10:31am · COVID-19 Coronavirus and Lung Health: What can you do? in COVID-19

@aeg73 Girl! I read your description of symptoms And couldn’t believe how many I share in common with you. I have Bronchiectasis, and I have m. Abscessus colonized in my sinuses and lungs, along with an ever growing list of various fungi & bacteria. I was diagnosed in 2015 following multiple pneumonias.

If it’s any help to you, I’ve been able to keep infections to about one per year since by daily use of an antibiotic and anti-inflammatory through my Navage nasal rinse device, as well as daily airway clearance using the vest, nebulizer with 7% saline and postural drainage in combination, as well as exercise. I still teach full time.

Like you I have also had the mysterious red ring of small bumps around my elbow, that came and went, they biopsied it and found nothing so called it “granuloma annulare”, the frozen shoulder, (always) neck problems, and now the pulsating muscle twitching/ spasms in my ribs on my sides and in my back non-stop for 1 month! The twitches are certainly not life threatening, and don’t keep me from sleeping, but MAN it gets old, and i have to think it’s a message from my body.

I would add gut issues, I experience at least 6 bad bouts of “gastroenteritis” a year. I started taking at least a Tbsp. of Miralax daily to keep things “moving”, and that barely does it.

– BTW Another patient commented she had the muscle twitches, and they found she had low magnesium. Praying for you and us all, Brenda.