Mycobacteria Gordonae questions

Posted by tjupin @tjupin, Apr 4 11:47pm

I have had 4 sputum cultures between December 2023 & January 2024, and all came back acid fast bacilli positive for Mycobacteria Gordonae. I have also had a high resolution CT scan of my chest which came back unremarkable according to the pulmonologist. The pulmo and infectious disease Dr have said they don't treat for M. Gordonae as it is a contaminate. Is this the case if you have 4 positive tests? I did not test positive for any other mycobacteria. I do have latent TB, but thankful it is not active. I've had the shortness of breath for 4 years, and for the past 6 months, I've had cough with sputum and extreme fatigue (to the point I'm practically non-functional most days). Any guidance is appreciated!

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pacathy | @pacathy | Apr 7 7:32am

When you are persistently ill, it never hurts to get a second opinion from leading docs.

Here’s one case report of it causing infection rather than being a contaminate. . I’ll check for more in a bit.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3354412/

tjupin | @tjupin | Apr 7 3:17pm

In reply to @pacathy "When you are persistently ill, it never hurts to get a second opinion from leading docs...." + (show)

Thanks so much for the article. One thing I noticed is that this patient had things show up on her CT scan which I believe helped in diagnosis. My pulmonary Dr said I don’t have anything on my CT scan to indicate illness 🤷🏼‍♀️
I just found out that Mayo Clinic in Arizona has accepted me. I’m also waiting on a call back from National Jewish Health in Denver. Hopefully we can get this figured out as six months with no answers has been discouraging. Thank you again!

pacathy | @pacathy | Apr 8 11:54am

I’m glad you’re consulting the top docs for this.
I did find some other articles of interest, but have a busy couple days and need to vet them better. As I recall from a quick look, the few cases had CT changes. I’ll post them in day or two.

Do you happen to have sinus issues and post nasal drainage that you could be coughing out? I ask because they believe that was source of my bronchiectasis. Just a thought.

suzanne11 | @suzanne11 | Apr 9 1:23am

How do you overall feel?

I have been to Mayo Clinic and Stanford. I have had several positive Phlegm test and Mac shows on My CT. I was told that there was improvement on My 2nd CT.
I have been doing the Neblizer once or Twice a day, But I keep getting lung infections. I am so getting tired of the way I fee. I am thinking about going on big 3.