Thank you for saying that Katherine. I was told by my Mayo Dr that a
bronchoscopy I had by a local Dr several years back was an unnecessary
procedure, that all I needed to have done was a sputem culture.
 

Still figuring out this site, I think I answered generally everyone. THANK YOU for the suggestions. You give me hope. I am going to ask my infectious disease doc about those drugs and alternating monthly antibiotics. PS. I had a bronch, no big deal, asleep then over, no pain either, just saying, nothing to be afraid of.

Hello Katherine.

No one is saying that 3 consecutive sputum tests are not the way to start. That is how it is done.

“There definitely are times when further means are necessary for diagnosis such as a bronchoscopy, etc.”

There sure are. What about when the patient cannot produce sputum?

Also, just as an example, below is a study, a case series of 31 patients with mainly nodular bronchiectatic MAC disease, 45% of which needed bronchoscopy or lung biopsy for diagnosis because sputum cultures were nondiagnostic:

Chest. 1999 Apr;115(4):1033-40.
Mycobacterium avium-intracellulare pulmonary infection in HIV-negative patients without preexisting lung disease: diagnostic and management limitations.
Huang JH, Kao PN, Adi V, Ruoss SJ.

Abstract
STUDY OBJECTIVES:
To review the experience of an outpatient pulmonary clinic with Mycobacterium avium-intracellulare (MAI) pulmonary disease in the HIV-negative population without preexisting lung disease.
DESIGN:
Retrospective clinical series.
SETTING:
University medical center.
PATIENTS:
The clinic charts of all patients who fulfilled the current American Thoracic Society criteria for MAI pulmonary infection and who had no preexisting lung disease or immunosuppression were reviewed.
MEASUREMENTS AND RESULTS:
Of 31 patients identified, 94% were female, 90% were white, and the median age at diagnosis was 63 years. The median time interval from symptom onset to diagnosis was 10 months. Bronchiectasis or small nodules without predilection for any lobe was found in 93%. Bronchoscopy or open lung biopsy for diagnosis was required in 45% because of nondiagnostic sputum cultures. At > or = 12 months, 50% failed therapy, 86% continued to be symptomatic, and 58% did not tolerate their initial multidrug regimen.
CONCLUSIONS:
These results emphasize the observed chronic nature of MAI pulmonary disease in this population, both before diagnosis and despite therapy. The sensitivity of sputum culture in this population is low, so an aggressive diagnostic approach, including bronchoscopy, should be considered if sputum cultures are negative. Current treatments are suboptimal because of poor drug tolerance and significant failure rates. Last, the preponderance of disease in older white women argues for a genetic or acquired immune deficiency to explain disease susceptibility.

Hello @internalmeddoc, we on the Mayo Clinic Connect are VERY grateful for any/EVERY research for our shared MAI/MAC and/or Bronchiectasis diseases. We have been VERY aware of our essential "orphan" status in the medical community .. so don't get me wrong .. if you come up with any medically accepted research .. we will be the FIRST to applaud you!

My only concern is that any newcomer to our Forum NOT consider a Bronchoscopy the first step on the journey toward diagnosis. Yes, it IS a step if they are unable to produce sputum with via: (SALINE SPUTUM CULTURE PRODUCTION IN HEALTH CARE SETTING
https://www.nationaljewish.org/programs/tests/sputum-induction/ ). Certainly THEN other methods should be considered. So your thoughts "The sensitivity of sputum culture in this population is low, so an aggressive diagnostic approach, including bronchoscopy, should be considered if sputum cultures are negative. " I consider are in order .. IF sputum production is NOT possible .. which has been true for some of our Members.

BUT UNNECESSARY Bronchoscopies have ALSO been ordered by questionable doctors not knowledgeable about our MAC disease! By one of our Members today "Thank you for saying that Katherine. I was told by my Mayo Clinic Dr that a bronchoscopy I had by a local Dr several years back was an unnecessary procedure, that all I needed to have done was a sputum culture.

SO @internalmeddoc .. PLEASE do continue your research .. we NEED further research on MAC!

But as I requested .. where DO you work .. do your research? You did not answer my question .. that would validate your authenticity. Best regards, Katherine

Hello Katmn:
I am a retired physician with a specialty in Internal medicine and an interest in infectious diseases, particularly the mycobacteria. My peer-reviewed articles appear on Medline and include an article related o MAC for The Journal of Infectious Diseases. My interest in appearing on this forum is not to validate anything, nor promote my particular papers. It is simply to add information when and if asked. Thank you.

@internalmeddoc, would you mind linking us to your peer-reviewed articles for MAC for The Journal of Infectious Diseases? That would certainly validate your research. Katherine

Internalmeddoc.....when I retired 11 years ago from a 40 year career as an RN.... I began to volunteer in the Red Cross Health service division. I bet you would find a niche within the organization....whether helping out in Shelters.....locally, nationally or perhaps internationally. In addition or instead, you could provide assistance to folks right after they have to flee from fires in their homes while being part of your area's Disaction Action team. The list of volunteer opportunities in Red Cross is endless!!! Tdrell

Hi, I was just wondering what you thought the reason I would get hemoptysis about 5 months after stopping the pills? It's happened twice now, same time frame. The pills (thebig 3) wipe me out, I stop taking, 5 months later, blood, I get scared and take the pills again, but the time I can tolerate them is getting shorter. It has been about 5 years now, I initially took pills for year and a half, but not possible now. Is is MAC? is it Bronchiectasis? both? I know no one knows for sure, just want your knowledge. Thanks! Christa

@unicorn .. Christa I am really worried about your start/stop antibiotic routine. With ANY antibiotic we are told to take for the FULL 7/10/14 day schedule to avoid resistance antibiotic being built up. I am REALLY concerned that if you continue to do this .. NO MAC/MAI antibiotic cocktail is going to WORK for you in the future!! This really does scare me for you! We have ALL dealt with initial side effects of the MAC treatment .. TOUGHED THROUGH it .. gutted it out .. tough as it was .. came through on the other side .. it DOES get better!! IF you allow your FEAR TO CONTROL you .. you may end up like other of our Members who are AWAITING A DOUBLE LUNG TRANSPLANT!! I DO SAY THIS to scare you!! What do you want .. side effects NOW .. OR awaiting a double lung transplant later because you wouldn't deal with the TEMPORARY "The pills (the big 3) wipe me out" .. Christa .. I don't mean to be too tough on you .. it is ONLY because I care this much to take the time out of my day to write this!! I could be doing a LOT of other things!! What I want you to do is call your doctor's office and get an EMERGENCY appt!! You need medical advice on what to do NOW .. NOT making your own decisions to start/stop your MAC antibiotics on your own. We are NOT doctors .. you need to take good care of yourself .. get good medical advice .. I am concerned for you .. I hope you understand my caring. Sending you a Big Hug! Katherine

@unicorn .. Christa Just found a GREAT explanation/video on Bronchiectasis and why the blood!! Watch it .. SO glad I found it!! Hope it helps you! Hugs! Katherine
https://www.youtube.com/watch?v=YeomndWSom8