(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

@anniepie I had my sputum test Jan 7, and I'm still waiting for results.

You can buy it yourself online to try, no Rx needed. My second one came from eBay in sealed package for under $50.
Sue

Hmm, I guess that would depend on the doc, the appearance of your lungs, and your history. My current ID & pulmo docs only test if you have symptoms, even though I have a history of MAC & pseudomonas. My daughter's doc tested because she had puzzling symptoms, but after a long wait determined no MAC or pseudo.
Sue

Dear Sue,

Hello, and thank-you for your reply. You have so many helpful things to say, and it is greatly appreciated. Did your daughter ever find out what it was that caused/causing the condition?

I was researching the hyperlucent lungs--which were never detected before all this started...the lung x-rays were always normal the few times they were taken over the years. So, maybe that is a clue in itself. However, two pulmo docs later, and they have never said a word about the hyperlucent meaning anything.

Isn't it true that if a person has MAC, even while on antibiotics, the condition is still detectable (especially if they are still having symptoms) in the sputum and a CT? The reason I am saying this is because maybe the fact I am taking antibiotics has affected the CT scan in some way. After reading many entries on this great site, it seems that even while on antibiotics, the condition is still detectable unless cured. As for my CT scan, maybe the hyperlucent IS the clue for me having MAC?

Hopefully, the doctor will still test me for MAC. It is already disappointing that she--the infectious disease doctor--told me I do not have MAC, based on one sputum test. The fact that I had to remind HER, that it takes several sputum tests, is very worrisome. Will find out next week what the doctor will do to help me. One thing is sure, if someone does not help figure this out, I can not see living more than a few years. It is draining and exhausting, plus I have been on antibiotics now for almost one year. That can't go on and on.

Thank-you again for your helpful advice.

On the topic of nebulizer/Aerobika use. I use the two attached to each other with 3% saline. I do this while simultaneously running my vest for 30 minutes. My pulmonologist recommended this approach. Mucus often comes up after the first 10 minutes and continues later in the vest/saline/Aerobika treatment. Sometimes there is nothing substantial until after the treatment or when I subsequently nebulize Perforomist. If I drink water or a citrus drink after the treatment, that seems to help bring up the mucus. With brochiectasis and a pseudomonas colonization, my lungs are producting a lot of mucus. I'm only taking azithromycin at this time. I've been off other antibiotics for the pseudomonas for at least 6 months. I'm convinced that keeping my lungs clear of a mucus breeding ground with this vest/saline/Aerobika treatment is the reason. Have others followed this or a similar approach and share my speculation about effects?

Dr. Huitt from National Jewish is adamant about not taking azithromycin on its own. Can lead to resistance to this very important drug.

Hello Connie @anonymous217382 My quest for a diagnosis of a chronic cough began 5 years ago with a chest Xray. The radiologist's impression was that the Xray showed "hyperinflated lungs suggestive of underlying COPD". But my PCP told me it was because of my anatomy (tall and thin) and was actually within normal. In your case maybe this could explain what they are calling hyperlucent lungs. 3 years later I was finally diagnosed with Bronchiectasis on a CT chest scan, then MAC was confirmed with a culture. Bill

Good luck Regina@cmi. It does sound like you'll need a bronchoscopy to do follow-up culture tests in future. That seems to delay results a lot because you're trying to get info out of a hospital, not just a lab.
Annie.

Yep it sucks Gina @ginak
Good luck when the results finally do come in

Thanks Glenda @glendamoseley1 -- that's really interesting. (I've wondered if mucus is just 'stuck' down in my lungs and not coming out}. I will talk to my pulm about this when I see her later in March.