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Wed, Oct 30 5:09pm · New type mouthpiece for Albuterol in MAC & Bronchiectasis

My daughter who has bronchiectasis and asthma uses one, but has not had amikacin or tobramycin. She likes the speed and small size, but says it doesn't always completely dispense all the med solution.

Tue, Oct 29 1:22pm · MAC antibiotics and side effects in MAC & Bronchiectasis

@derbeltal Hi, it's very hard to say – every individual responds differently. Some cannot tolerate the meds, some have few side effects, others figure out how to manage. Here is a little about my journey:
I was diagnosed with bronchiectasis and pseudomonas after being quite ill for over a year with a horrendous cough, weight loss, fatigue, intractable asthma and intermittent fever. While being treated for pseudomonas, the MAC cultures came back positive. Clearing the pseudo took 4 courses of antibiotics including tobramycin. Then in July 2018 I started the Big 3, 3 times a week. My cough cleared, and the asthma symptoms eased, but I battled fatigue, gastro symptoms and weight loss. Fast forward to today…I am on the Big 3 daily because the infection still shows in my cultures and CT scans showed increased size of spots in my lungs. I have stabilized my weight (much lower than I would like) by forcing frequent, small, high-calorie meals (no appetite.) The fatigue is always with me – some days worse than others but manageable. By taking my meds at bedtime and drinking ginger tea/real ginger beer often I am able to manage the nausea & other gastro issues. I am awaiting the latest sputum test results and the next CT to see if we can drop back to 3X/week. I manage the breathing/lung clearance with alternate nebs of 7% saline and levalbuterol – one of each per day when sputum is abundant, on alternate days when not, as well as my Aerobika breathing device. I am paranoid about the hearing and vision threat by the meds, so see the opthalmologist and audiologist every 3 months – so far, so good. Also my ID doc does my bloodwork every 3 months to check blood counts and liver/kidney function. I am tolerating this regimen because I know how ill I was before starting the meds, and know I could not live that way for long – and I have a lot left to live for.
Good luck to you!

Tue, Oct 22 5:47pm · I was recently diagnosed with Bronchiectasis. in MAC & Bronchiectasis

@beatitnow I answered you under the Arikayce topic where you also posted.

Tue, Oct 22 5:46pm · Starting Arikayce - nervous in MAC & Bronchiectasis

What are the results of your most recent sputum cultures and CT scans? Do you do any nebs or use a flutter device to keep your lungs clear? Have you talked to your pulmonologist or infectious disease doc? Everyone has a different experience with MAC and bronchiectasis.
In my case, even though the antibiotics (daily) have not eradicated the infection, I persist because the most recent CT shows still-growing pockets of infection and the cultures keep growing the bug. I don't ever want to feel as sick as I was when I started treatment in June 2018. We will be revisiting the issue after my next CT in December, considering cutting back to 3x/wk for 6-9 months if the scan looks better and my cultures are clean.
Other people here will have different stories for you. You will need to base your decision on your health, whether you still have actve MAC, other conditions you have – I recommend you talk with your doc before you make any changes.

Sat, Oct 12 12:34pm · Who is using Nanobebe microwave bottle sterilizer for nebulizer, etc. in MAC & Bronchiectasis

I checked with my daughter – she uses the Nanobebe microwave sterilizer for her neb and Aerobika. She uses a low setting for 3 minutes and says it works. I have been hesitant to try it because my insurance was reluctant to pay for mine in the first place. Can't imagine their reaction if I ask for another!

Sat, Oct 5 4:26pm · Best Shower heads for MAC in MAC & Bronchiectasis

"As for testing, can you name 1 Standard Showerhead Company like Kohler, American Standard or Grohe that HAS tested their showerhead for mycobacteria?"
Steve, as far as I know, no other company is making any claim that their showerheads are free of mycobacteria. Since you are, I asked whether you had your product tested after significant home use – to prove your theory. If the major marketing "hook" is absence of specific pathogens, isn't the minimum proof impartial testing by an independent lab?
For myself, I have decided that since mycobacteria is ubiquitous, eliminating it from the showerhead is not going to eliminate it from my life, so I have decided it's not something i plan to worry about. I take reasonable precautions and go on with my life. Both my pulmonologist and ID doc approve of my approach. Other people may reach a different conclusion.

Tue, Oct 1 9:32pm · Best Shower heads for MAC in MAC & Bronchiectasis

Interesting anecdotally, but not independent laboratory testing…maybe I'm just too much of a skeptic at heart.

Tue, Oct 1 7:51pm · Best Shower heads for MAC in MAC & Bronchiectasis

Steve – The premise behind the Shower Clear head is interesting, but is it proven? I am curious as to whether you have had your showerhead tested by an independent testing laboratory to determine whether mycobacteria are present after several months of use.