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Mon, Feb 25 2:14pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Terri. Yes, they gave me 6 different cocci blood tests. In fact, cocci was what the ER strongly suspected I had after my bout of hemoptysis. They say that the false negative rate on cocci tests can be as high as 70%. The culture isn't showing cocci, but some other fungi (which had a very long name I can't remember).

Sat, Feb 23 10:08pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@lnduh66, not sure what you mean by "fungi check for MAC'. MAC infections are caused by mycobacterium which are killed by antibiotics. Fungal infections are caused by fungi and are treated by anti-fungals.

If you had your bronchoscopy on Tuesday, it would take 6 weeks minimum to grow enough culture and speciate MAC bacteria (unless you're going through NJH). Not sure exactly how long the fungal cultures take, but certainly no more than 8 weeks.

Fri, Feb 22 5:15pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I was diagnosed by a community pulmonologist in AZ a couple of months ago, but decided to get a second opinion at Mayo. There's been an interesting turn of events regarding my diagnosis because my AZ Mayo pulmo consulted with a pathologist colleague at Mayo Rochester who reviewed my culture slides and did not see any MAC, but did see fungi, so now they think the infection and cavity is due to fungal growth. Not sure why the fungi weren't seen the first time around by the AZ state pathologists. He believes there could have been MAC in the culture, but that it was secondary to the fungal infection and that there may have been culture contamination. If there was contamination, still don't understand why the Mayo pathologist isn't seeing MAC on the slides though. Anyway, still need to get more testing to find out if I have a gene that puts me on the 'mild' CF spectrum (also being sent to Rochester). Apparently, 3 to 4 percent of the population have a CF gene, but are asymptomatic or have very mild symptoms. All this to emphasize the importance of seeking second opinions from experts in the field.

Sun, Feb 3 3:01pm · New to Mycobacterium Gordonae HELP needed in MAC & Bronchiectasis

NJH = National Jewish Health in Colorado. They have several NTM videos posted on their YouTube channel and Dr Daley mentions Gordonae in passing saying that it lives in water supplies, but is not known to cause disease in humans.

Sat, Feb 2 4:44pm · New to Mycobacterium Gordonae HELP needed in MAC & Bronchiectasis

Per Dr Daley at NJH, Gordonae does not typically cause disease.

Tue, Jan 29 7:03pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@jkiemen Hi Jo Ann. It's encouraging to hear that you're doing well on the meds and are finishing up your round of treatment. Can you tell me how they are testing to see if you are negative for the bacteria? My understanding is that they test sputum on a regular basis (monthly?) and once you achieve your first negative test, they recommend meds for another 12 months. If you can't produce sputum, do they have to do regular broncoscopies to get the culture?