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.
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.
Thank you. I learned soooo much last night from the first links you sent me. I have a lot of questions to ask my doctor. And, I think I've found 2 doctors in the Phoenix area who treat this. Very grateful to have this support group.
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.
Thank you Sue. I decided my asthma (my underlying condition) was getting worse and went to a pulmonologist my cardiologist recommended. He ran allergy blood work on me and found I'm allergic to everything and I tested positive for TB. I used to live in SE Asia. Thought maybe I picked it up there. He did a bronchoscopy, flushed my lungs and sent that to Sonora Quest Labs. They diagnosed the mycobacterium abscessus complex (slow growing, non-infectious) last week. After researching some sites this group referred me to, I discovered there are 3 subsets within this complex. I don't know which one I have. The lab is supposed to be doing drug sensitivity testing now. Perhaps that will narrow it down because they don't respond to the same drugs.
I've only seen the Dr once and am now communicating with the NP, which I'm not comfortable with. I think I need a specialist who is familiar with this infection. Thank you for Dr. Lusim's name, and I have another at St. Joseph. They seem to be the only two in Phoenix who treat this infection.
I'm just beginning this journey and am so grateful to have found this support group. Thank you for reaching out to me.
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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.
Thank you. I learned soooo much last night from the first links you sent me. I have a lot of questions to ask my doctor. And, I think I've found 2 doctors in the Phoenix area who treat this. Very grateful to have this support group.
Thank you Sue. I decided my asthma (my underlying condition) was getting worse and went to a pulmonologist my cardiologist recommended. He ran allergy blood work on me and found I'm allergic to everything and I tested positive for TB. I used to live in SE Asia. Thought maybe I picked it up there. He did a bronchoscopy, flushed my lungs and sent that to Sonora Quest Labs. They diagnosed the mycobacterium abscessus complex (slow growing, non-infectious) last week. After researching some sites this group referred me to, I discovered there are 3 subsets within this complex. I don't know which one I have. The lab is supposed to be doing drug sensitivity testing now. Perhaps that will narrow it down because they don't respond to the same drugs.
I've only seen the Dr once and am now communicating with the NP, which I'm not comfortable with. I think I need a specialist who is familiar with this infection. Thank you for Dr. Lusim's name, and I have another at St. Joseph. They seem to be the only two in Phoenix who treat this infection.
I'm just beginning this journey and am so grateful to have found this support group. Thank you for reaching out to me.
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