New to Mycobacterium Gordonae HELP needed

Posted by jammer @jammer, Fri, Feb 1 3:07pm

I just found out 2 weeks ago what my diagnosis is. Doctor did another ct and got results today. Was told that this is causing holes in my lungs. Has anyone has this problem I am scared to death and don’t know what is going to happen to me. I am going to see a infectious disease doctor local and then I dont know what. The fear of the unknown just makes me want to stop my life and run away

@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.

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

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

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@extracare808

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

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@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.

Liked by tdrell, Jennifer

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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

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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.

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@extracare808

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.

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@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

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Thank you for the info tydrell

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@jammer

Thank you for the info tydrell

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@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

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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

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Has anyone out the had Mycobacterium Gordonae?? I understand this is rare and would like to connect with someone that has been through this. PLEASE share.

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Hi @jammer you may have noticed I moved this post to your initial discussion on Mycobacterium Gordonae so that more users can find what has previously said about this disease.

While we wait for others to join this discussion, how have you been feeling lately? Any updates to give us?

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I have been on three antibiotics for 6 weeks now and my energy level has gone to zero. I get tired much easier and get very little sleep. I am on Rifampin 300 mg 2x a day, Ethambutol 1000 MG 1x day and Azithromycin 500 mg 1xday. Has anyone had these problems with the meds?? I get tired really fast and find it hard to do normal everyday things that I used to do. I would love to hear from others

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Hi @jammer you may have noticed I moved your post to your original thread on Mycobacterium Gordonae so that other uses can find what has previously said about the disease, and so that you can have all the information you receive in one place. Simply click VIEW & REPLY in your email notification to get to your post.

While we wait for others to join in on the conversation, did your doctor say that fatigue was one of the symptoms of these medications? Are you having other side effects in addition to that one?

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