Can I have your input please?

Hello
So sorry you are having such a hard time in so many ways.
I know you are not here in the U.S. When I went to NJH in Denver and then to Tyler in Texas to see two highly qualified doctors in Bronchiectasis they always did a battery of tests to rule out all possible other problems that can be related to causing and being in conjunction with Bronchiectasis. If you would like to know the typical tests they do when patients go to them for Bronchiectasis, I believe they show on one of their website areas the different tests they do.
I wonder if you have something they have not tested you for that might be causing all you are going through.
If you feel O.K. when nebulizing and after nebulizing do what you feel is best for you and seems to help. My two cents.
I have a neighbor who's husband had Sarcoidosis and Bronchiectasis together. She moved into the neighborhood a couple of years ago just about the time I was diagnosed with Bronchiectais and was shocked to find someone who knew about Bronchiectasis. So few, until recently, had/have ever heard of it.
Do I remember correctly, are you in Australia?
This is not fun for you at all and so frustrating I would imagine.
Barbara

@blm1007blm1007

Hi Barbara
Thank you for your response. Yes I am in Australia and I think you are right that the initial nasal swab wouldn't have been tested for NTM etc but it was a quick check which appeared to rule out a lot of the usual suspects for the general population. The second was a sputum done by a different Dr in a small window between antibiotics and don't think it would have screened for those things, I guess because it appeared as more of an acute infection.

If I am correct, NTM type infections are more subtle and are often diagnosed through gradual weight loss etc.

I am back to nebbing once daily.

This antibiotic seems to be helping so fingers crossed.

How are you travelling?

Narelle

@narelled23 Yes, your constant illness over several months raises suspicion of NTM/MAC. Diagnosing NTM is not subtle, but it does take time. There is a quick gram stain test done on a slide to see if mucus tests AFB positive, but it is not definitive by itself. NTM is very slow to grow, so part of the specimen must be smeared on growth medium in special trays and incubated for 6-8 weeks to see what grows. If it is pseudomonas, it will grow out quicker - more like a week or two.

@sueinmn
May I ask if what I explained sounds like it could be 'NTM/MAC, Pseudomonas and the other "nasties" that plague us.'

I had congratulated myself that I had avoided those problems.

@narelled23
Pseudomonas does not respond to either Azithromycin or Amoxicillin. That does not mean you have it but worth asking your Pulmo. if he or she thinks a test for it is possible.

May I ask what people feel about ENT scopes, and the dangers of infection? I would love someone to check out my throat area, particularly because of the closing off of my airway after coughing/inflammation. Thankfully it lasted only about 30 seconds...which is a long time not to be able to get a breath when you are trying to. There may be some swelling or something there, aggravated by an infection...but I do not want to run the risk of introducing another problem at the moment. I have an appointment for 2 days time, but have advised them of my concern.

Prednisone is great for inflammation in the lungs and used for other areas as well, but I have a terrible time sleeping while on it and it winds me up like a top and I cannot sit still! Ì have had BX for over 20 years and many, many bouts with pseudomonus and several bronchoscopies. I have been on Brinsupri for 6 months and it has worked wonderfully for me, no side effects and I am on the 25 mg dose. So sorry to hear several have developed a rash or worse. Hang in there and hopefully you will see positive results too.

@narelled23 The Flexible Laryngoscope is one of the most valuable tools the ENT has for evaluating issues in the throat. After many years of "stuttering" through diagnoses and issues, with the scope the doc was able to rule out any significant reflux, any physical obstruction, and find that vocal chord dysfunction was the cause of my choking episodes and vocal issues.
Our clinic uses disposable tubing to manage the slight infection risks, and the probe used for tissue sampling came straight out of the bag in which it was sealed after sterilization via autoclave.
It was not fun having my throat numbed, but far less invasive then a full endoscopy, with no prep (fasting, etc) required.

If the doctor takes proper precautions, the infection risk should be very small, and the ability to find a proper diagnosis is quite good.