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3 days ago · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I haven’t tried candied ginger but will put it on my grocery list. Thank you.

I drink lemon juice and a few slices of ginger root in hot water (like a tea) in the mornings, when my nausea is bad. I take gravol (ginger only) when the lemon ginger tea doesn’t help.

I feel like I can deal with this, knowing that it’s oart of having Mac and not something else.

Thanks again.

3 days ago · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thanks to everyone for their responses to my question re: nausea. I’m hopeful that my nausea is from the Mac and not anything else so your responses were reassuring to me.
I hadn’t realized how much weight I lost before being diagnosed with Mac but I’m learning about how important it is to maintain a healthy weight. I’ve gained close to 20 pounds since starting treatment and I eat through the nausea so I can keep the weight on. I hope that the extra weight helps to keep me healthier.
This disease is certainly complex!

4 days ago · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Wondering if anyone can help me out in this. II experiences significant nausea before starting on medication (big 3) last February. My nausea went away after a few weeks in the medication but started when I had to stop them in August due to side effects. The nausea started a couple of weeks after stopping and has persisted, although not as bad as it was prior to the medications.

Is this a symptom of Mac? I’ve had some GI testing done but nothing shows up so I’m thinking it’s the Mac. I’d appreciate any comments on this.

Thanks in advance!

Wed, Nov 6 6:30am · CT scanning to diagnose/monitor MAC in MAC & Bronchiectasis

I was recently made aware of low-dose CT scanning (as opposed to regular CTs) and wonder if these are being used for diagnosing/monitoring lungs. I have had one CT and scheduled for a follow up soon. I would prefer a low dose CT and will ask my doctor.
Does anyone have any experience with these CTs?
Thanks in advance,

Tue, Nov 5 6:30am · MAC Treatment: When will I see side effects? in MAC & Bronchiectasis

I had to go off the meds when I got tinnitus – the issue wasn’t so much the tinnitus as some hearing loss that went with it. I had been followed by an ENT doctor since starting the meds and had monthly hearing tests so went for another test when the tinnitus started. I never had tinnitus before this.

Wed, Oct 30 9:54am · MAC Treatment: When will I see side effects? in MAC & Bronchiectasis

Good question about chills. Are sweats, similar to hot flashes, related to Mac? I had peri menopausal type hot flashes prior to starting on medication last February. They never went away while I was on the big 3 for 6 months and they persist now that I’m off (still positive on last sputum samples).
Anyone have experience with this?
Thanks,

Tue, Oct 29 7:05am · MAC Treatment: When will I see side effects? in MAC & Bronchiectasis

Hi,
That was a question I had when I started the big 3 as well. I developed ototoxicity after about 6 months on the medication. One day I woke up to terrible tinnitus (on testing, I also had some hearing loss). It was likely from the azithromycin but I stopped everything.

That was 2 months ago and I’m still off the medications and continue to be fairly well, using a nebulizer with saline every morning, followed by a number of lung clearing exercises and use of an Aerobika.

Good luck to both of you!