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What is Non tuberculosis mycobacterium abscesses

Lung Health | Last Active: Aug 17 2:05pm | Replies (13)

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I have just been diagnosed with mycobacterium abscessus complex, slow growing non-infectious TB. Lab is supposed to be doing drug sensitivity testing to come up with a multi-drug cocktail. Is anybody else in the Phoenix area? Mayo will not accept my insurance. I may have to change next year. I want a 2nd opinion for drug treatment, but don't know how to proceed to find someone who specializes in this. Am conferencing with my GP next week. He's in the Banner Health system here. I was told the cocktail could result in diminished lung capacity. Has anyone else experienced this? Does capacity come back after you stop treatment? Sounds like this is going to be a very tough year. Glad I found this group.

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Replies to "I have just been diagnosed with mycobacterium abscessus complex, slow growing non-infectious TB. Lab is supposed..."

Can you tell us a little about how you came to be diagnosed with a Mycobacteria infection? Do you have other lung issues like Asthma, COPD or Bronchiectasis? Are you being treated by a pulmonologist or infectious disease doctor?

Just by way of a introduction, NTM or Nontubercular Mycobacteria, is a relative of Tuberculosis, but is not TB. NTM has many variants, and each may be susceptible to different antibiotics. This is a RARE type of infection, with less than 150,000 to 300,000 active cases in the entire US, meaning many doctors are not familiar with the latest protocols for treating and managing it.

The Banner Group in Phoenix lists one pulmonologist, Stephanie Lusim, as specializing in treating Bronchiectasis, which often accompanies the NTM infection.
https://doctors.bannerhealth.com/provider/stephanie-iusim/1963779
As for the antibiotics diminishing lung capacity, the infection itself, and any underlying disease are more likely to cause that. The treatment is tough, but it helps prevent further damage.
Please feel free to ask us as many questions as you would like - this is a path that not too many people are familiar with.