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Posts (71)

Sun, Mar 22 9:35am · I can stop MAC antibiotics in June! in MAC & Bronchiectasis

@rits This is great news! I haven't been on the site for awhile, but you're the first person I've heard of who reports clear having used the same protocol as me. I too am MAC free after 3 sputums tested within a 5 month period. I initially was on the Big 3 in 2018, stopped for a few months, then started again. Added Aricayce inhaled for 3 months. Eventually stopped the Rifampin, but remain on Azithromycin and Ethambutol. The one thing I hope to continue is nebulizing 7% saline as I have never had a problem with it. Especially now with Covid, I can't help but think its cleansing my lungs! Follow up w doc in a month and we'll see what's next med-wise. It is possible to convert to negative and I'm so pleased to hear your good news!

Wed, Jan 8 7:08am · When should your PCO start treatment if your CAT scan was taken at as in MAC & Bronchiectasis

@jillsart how frustrating for you. 3 months is a long time to wait for direction. The best I've learned from this group is we need to be proactive and sometimes aggressive in getting answers for our treatment. First, if it were me, I would want (ask for/sign release for) my own copy of the CT disc and radiology report, that way its handy if you walk into another physicians office. Plus, you want to know for yourself exactly what it says. Call or stop by your primary doc's and ask him/her to talk to you about the findings. Ask if he/she has had experience with whatever your CT report says and if not, make a referral to a lung specialist ASAP. Check w your insurance. I don't need referrals, maybe you too can make that appointment yourself. Somewhere along the line, and soon, a sputum sample will be needed to test for bacteria.
Depending on your location, it may prove a challenge to find a doc who is knowledgeable about your condition, but a simple sputum CAN reveal if you have MAC/MAI.
I know you're tired but if you can get going on some phone calls you will feel more in charge of your health.
Tell us where you are, someone may suggest to you a doc they use.
Praying for courage and answers.

Mon, Jan 6 1:16pm · How to stay healthy with Bronchiectasis in MAC & Bronchiectasis

@jenniferhunter @thumperguy wanted to jump in this conversation and report that I had a severe reaction taking the flouroquoin Levofloxacin (Levaquin) to address Pseudonomas. I didn't heed the black box warning because all of my meds have scary warnings. (I'm on the "Big 3" and now, Aricayce)
After taking the Levofloxacin for 28 days I just had to read up more and that's when I "saw" the warning. I immediately called my doc and stopped that medication. It took months for my ankles (mostly) and areas around my shoulders, knees and elbows to calm down. I actually wore ankle supports the pain was that great.
One last piece of info. Apparently I was primed to have a contraindiction as I suffer from osteoarthritis, osteoporosis and DDD. Black box says "warning" if you have musculoskeletal issues. Plus I just hit 60. Of course medicine affects us all differently.

Oct 29, 2019 · New type mouthpiece for Albuterol in MAC & Bronchiectasis

@ethanmcconkey i have not heard of this mouthpiece but am interested, I like the idea of faster delivery, and battery operated (travel) Will be checking it out. For now, I would just use it for saline, I couldn't tolerate the nebbed Albuteral, made my heart race. Thanks for bringing it up!

Oct 11, 2019 · Percussion vest in MAC & Bronchiectasis

@gj53 sure, why not? Ask your doc to recommend a nebulizer unit and either the 3% or 7% saline solution. These things can be bought thru various websites, or your Part B insurance covers it. (If you're in the US) It's covered under DME (Durable Medical Equipment) and so is the saline under Part B as its used with the DME. I had a heck of a few months getting insurance to pay for the saline because the pharmacy kept running it through Part D prescription meds. It took just 1 "rotating" pharmacist to call that to my attention. Also, you can poll people on here about the nebulizers they like and why. Best to you. Margie

Oct 10, 2019 · Percussion vest in MAC & Bronchiectasis

Hello @gj53 I'm diagnosed w Bronchiectisis and MAC, and I didn't produce much sputum when first diagnosed over a year ago. My percussion vest (inCourage Airway Therapy Vest) was the 1st investment on my journey to better health. I didn't think it did much for the first couple of months but was assured it was loosening the mucus in my tubes. I did a puff on an albuterol inhaler first to open up my airways. Thinking bigger is better I asked my doc for the nebulizer albuterol and couldn't tolerate it either. Made me too jittery. I did start nebulizing every morning w 7% saline solution (moisturizes, thins the mucus,cleanses) following up w the vest. Most days I can now cough up a couple or a few big plugs. The machine is expensive everyone's co- pay is different. Best of luck with your decision. Margie

Sep 23, 2019 · Pneumococcal Vaccinations against pneumonia in MAC & Bronchiectasis

@alleycatkate i don't know which pneumonia shot I got, but I see my pulmo doc tomorrow and we'll discuss it.

Sep 23, 2019 · Pneumococcal Vaccinations against pneumonia in MAC & Bronchiectasis

@alleycatkate Hey Kate, I got both the flu and the 1 pneumonia shot last fall and was hospitalized this past spring due to having both at the same time! Was told there are so many strains of flu and pneumonia and it could have been worse. We're all different tho…