0 Votes
2 Answers
new diagnosis, so many questions..

My near 80 yr old father was recently diagnosed with Bronchiecstesis and MAC. He saw an infectious disease specialist today and she put him on the "big 3" on a daily regimen. His latest scan shows cavitation. So far his only symptoms are chronic cough, …

Author: LAT
0 Votes
4 Answers
big 3 question

Is it unusual to take the Big 3 daily with no "days off"? I keep reading people talking about their "days off" but my understanding is that I'll be taking these drugs daily. There was no mention of "days off"

Author: Tracer
0 Votes
1 Answers
Big 3

I'm new here. Keep seeing Big 3. What is that?

Author: netmouse
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0 Votes
3 Answers
how to take probiotic with Big 3 & safe to take vit. c,d, omega3 & zinc?

drug interactions with suppliments

Author: Tracer
0 Votes
2 Answers
What is the usual dosage for the Big 3?

big 3 dosage I feel like what I'm being prescribed is a bit high. I weigh 118 pounds and Rx is for 5 days. 600mg rifampin daily, 800 mg ethambutol 2x daily, and clarithromycin 500 mg 2x daily.

Author: Tracer
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0 Votes
1 Answers
Has anyone been diagnosed with mycobacterium gordonae?

After a year of bronchiectasis, I've finally had a sputum culture positive for mycobacterium gordonae . Has anyone been treated for this? If yes, what drugs, what length of time, and what results. Thanks,

Author: KarenU
0 Votes
2 Answers
Organ donation

Go to there website I have it on my drivers license. I don't know what they would want I think everything is wore out. https://www.organdonor.gov/register.html?gclid=CjwKCAiAi4fwBRBxEiwAEO8_Hlmx_67Sp-Z-EoX-ItMQQ6pI …

0 Votes
4 Answers
Anyone taking Arikayce? At $13,000 a month, how do you pay for it?

Hope someone out there can help. I’ve been on heavy doses of 3 antibiotics since Jan of 2017 for MAC. Sputum still showing positive and showing on CT 3 weeks ago. My MAC doc prescribed Arikayce as an addition but the insurance company has denied coverage …

Author: Jenny
0 Votes
7 Answers
Clofazamine

I will be starting taking Clofazamine soon and am wondering if anyone else has had experience taking it. I am interested in any tips on dealing with side effects and what sort of side effects you had. (I am being treated for mycobacteria abscessus.)

Author: Deb19
0 Votes
2 Answers
Just getting started

I am an older woman with a lifelong history of respiratory allergies with frequently recurring dry cough, and a tendency for colds to develop into bronchitis. I also have Crohns colitis, which spreads occasionally to my upper GI, and have been in …

Author: lmb100
0 Votes
6 Answers
Top Centers for MAI Treatment?

Hi I was recently diagnosed with MAI And live in a rural area...Two Pulmonologist’s that I’ve traveled to have said not to seek treatment because of side effects...Now a third says that I should get treatment....Where are the top places to go for …

Author: suze
0 Votes
7 Answers
Who uses Mucomyst? Please share experiences, thanks.

I used it for some years its strong and smells awful but it does the trick. I had the 2.0 I do believe. Some ppl it maybe to strong and really irritate the airways. Now I have hypertonic saline much better than this. There is a supplement that does the …

Author: suelipton
0 Votes
1 Answers
advice for taking the Big 3?

Will be starting treatment after the holidays. Just hoping for some advice, dos and don'ts for taking these. Not sure if it will be 3 days a week or 5. Will know more next week. If anyone has some advice I'm all ears.....or eyes in this case! :)

Author: Tracer
0 Votes
6 Answers
Anyone treated with augmentin antibiotic?

Anyone found it to be helpful? I'm done with it but really didn't seem to help other than mucus is clear now. Shortly after taking my dose I seemed to get more throat and sinus inflammation. My doc prescribed this along with pred for a sinus infection …

Author: ksuzanne
0 Votes
2 Answers
treatments

Just received message from pulmonologist that they want to start treatment for MAI as it MAY be dominant cause of radiographic findings. Says treatment will not affect ability to later treat chelonae abscessus.......anyone else have this happen?

Author: Tracer
0 Votes
6 Answers
Anyone using PALL Med filters on shower or taps?

Hello I have been recommended Pall med filters for NTM-Xenopi control in home shower and taps. has anyone used these or got advise on which ones are best?

Author: Loopy
0 Votes
1 Answers
anyone on nebulized mucomyst?

Wondering if anyone nebs mucomyst and if you think it helps. I feel it makes me more sob. Dehydration?

Author: ksuzanne
0 Votes
4 Answers
Has anyone tried N-A-C or Quercetin (two different OTC supplement) to reduce mucus production?

Good morning! There was an article posted a while back that talked about NAC and Bronchiectasis, it may be something helpful with asking your doctor if it may be right for you. https://bronchiectasisnewstoday.com/2019/05/09/n-a...

Author: JayNYC
0 Votes
3 Answers
Hypervolt instead of a Vest or chest PT?

Has anyone tried using Hypervolt instead of a vest to improve chest clearance. i discovered it through a physical therapist for back pain, but the 'banging' movement of the tool reminded my of the chest physical therapy i received a while back. …

Author: JayNYC
0 Votes
7 Answers
How cautious must you be with water?

Diagnosed with bronchiectasis & NTM abscessus/boletti. So confused as to what part water plays in this disease. I've read different things and not sure what's being too cautious or not cautious enough. One article recommended "whole house water …

Author: Tracer
0 Votes
6 Answers
Travel tips with a chronic condition?

Tis the season of travel. Do you have any tips that have made traveling easier while dealing with a chronic lung condition? Please share!

Author: Gretchen
0 Votes
2 Answers
Anyone else live 65 years after Bronchectasis Dx?

I was born in 1946. I was diagnosed with chronic bronchitis at age 4 after a few events of bronchitis and two of pneumonia - the first at three months. At six I was diagnosed with Bronchiectasis and my parents were told I would not make it through my …

Author: GaryL
0 Votes
6 Answers
What do you drink on a plane when boiled water or spring water is not availed?

safe beverages on planes and in rest

Author: SDP
0 Votes
4 Answers
ARICAYCE side effects

I have only been on this drug for 7 days but have noticed after each treatment my oxygen goes down and my heart rate goes up. My physician said at this time he is not concerned. Has anyone else had these side effects this early in treatment?

Author: JEG
0 Votes
5 Answers
Anyone have a sputum sample that cultured Mucor?

Hello Trusted Friends, My lungs are colonized with MAC Avium, HIB, m. Abscessus has shown up a couple times, a little Aspergillus, and now my most recent culture grew out a fungus called Mucor. I have m. abscessus in my sinuses, too. The ID doctor …

Author: BRigby
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