New to Mycobacterium Gordonae HELP needed

@jammer I was initially completely opposed to taking "the big 3" because I was told the treatment is worse than the disease. I was first diagnosed with NTM around 2008, diagnosed with bronchiectasis in 1997. But a year ago, holes started appearing in my lungs. That motivated me to get over my fear and give the drugs a chance. I was pretty uncomfortable on my "medicine days" for the first month or so. I kept experimenting with timing and meals and probiotics and now I have less discomfort on the days when I take the medicine. I'm now four months into the treatment, and I don't know what the future will be, but I have to admit that the medicine has improved my life: more energy, stronger voice, absence of cough, radical reduction of phlegm. Next month I'll have a follow-up CT scan to see if the holes are healing. I hate the meds, but I appreciate the results. Everyone is different, and your experience may be completely different from mine, but sometimes this regimen works. Maybe it's worth giving it a try. If it doesn't work for you, you can stop and try something else. You need a doctor who will support you and be open to alternatives.

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

WHAT??? who is he and where is NJH. My Gordonae is eating holes in my lung

@extrcare808 & @jammer, I had read the same thing about Gordonae not being such a trouble-maker. Makes me wonder if something more isn't going on. @jammer have you been out to the Southwest by any chance in recent times? Could you have 'Valley Fever'? That can cause holes in your lungs as well and rarely do drs test for it.

Thank you for your reply, I have not been out west , my doctor did a bronco and sent samples to the Bureau of Public Health Lab in Jacksonville, FL they tested for 6 weeks a AFB Culture with a acid fast Bacilli Culture and came back with the answer as Gordonae. I just had a ct done last week and was told I am having holes in my lungs from the organism . So confused. OH MY

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.

@jammer....my infectious disease dr Huit at NJH told me that the gold standard for deciding when to Rx for NTM infections is 2 positive cultures as well as bronchiectasis on CAT scan. Tdrell

Thank you for the info tydrell

@jammer...earlier you asked who Dr Daley at NJH is. He is a Pulmonologist who is Chief of Division of Mycobacterium and Respiratory Infections at A top facility for respiratory problems-NJH.He also is a speaker at NTM workshops across USA. He is a Professor of Medicine at u of Colorado. He was chair and board member of American Thoracic Society....and still part of its workgroup revising the NTM treatment guidelines.Safe to say he is a national expert on NTM.tdrell

Sorry you are fearful, I understand, am there. Better to educate, in
place of fear. For me I prefer to keep my cup half full, it beats the
alternative. The mind, combined with fa it is very powerful. Take care