Mycobacterium Lentiflavum

@squire123 Hello, I am guessing you never got any responses to your post 3 months ago about M. lentiflavum, but that doesn't surprise me. It is one of the family NTM (non-tubercular mycobacterium) and fairly closely related to the group known as MAC (M avium complex.)

NTM is considered a rare infection, affecting perhaps 100,000 people in the entire US. M. lentiflavum makes up less than 1% of the known cases. So the odds of any other Mayo Connect members also have it are very low.

However, being closely related to MAC, treatment is nearly the same, with 3 antibiotics. The main difference is that the primary one used is clarythromycin instead of azithromycin.

Have you been prescribed antibiotics for your infection?
Sue

Hi Sue, Is M. lentiflavum Harder to treat than MAC? My doctors are deciding whether to start treatment or wait until my appointment with NJH in August. I use inhalation tobramycin for pseudomonas, but also have bronchiectasis, bronchiolitis & a few other lung issues. I was treated for MAC about 2 years ago & kicked it with “the big three”. I am more worried now because my lungs are in worse shape & having a new MAC adjacent infection.

Hi D - I don't know about "harder to treat" - it is just that a few different meds may be used. If there is any place to get the "exact" treatment for M lentiflavum, it is a clinic like NJH. Just remember, mycobacteria, with few exceptions, grow VERY slowly, so the risk of waiting a month or six weeks to start treating is low.

What would I do in your place? Use the Tobramycin - it at least will keep other stuff from growing. Do my airway clearance every day, using 7% saline (if tolerated.) 7% saline has been shown to suppress the growth of mycobacterium, and even reduce it in some cases. Wait to start any new antibiotics until after evaluation.

Are you comfortable waiting?
Sue

@squire123 Hello, I am guessing you never got any responses to your post 3 months ago about M. lentiflavum, but that doesn't surprise me. It is one of the family NTM (non-tubercular mycobacterium) and fairly closely related to the group known as MAC (M avium complex.)

NTM is considered a rare infection, affecting perhaps 100,000 people in the entire US. M. lentiflavum makes up less than 1% of the known cases. So the odds of any other Mayo Connect members also have it are very low.

However, being closely related to MAC, treatment is nearly the same, with 3 antibiotics. The main difference is that the primary one used is clarythromycin instead of azithromycin.

Have you been prescribed antibiotics for your infection?
Sue

@squire123 Hello, I am guessing you never got any responses to your post 3 months ago about M. lentiflavum, but that doesn't surprise me. It is one of the family NTM (non-tubercular mycobacterium) and fairly closely related to the group known as MAC (M avium complex.)

NTM is considered a rare infection, affecting perhaps 100,000 people in the entire US. M. lentiflavum makes up less than 1% of the known cases. So the odds of any other Mayo Connect members also have it are very low.

However, being closely related to MAC, treatment is nearly the same, with 3 antibiotics. The main difference is that the primary one used is clarythromycin instead of azithromycin.

Have you been prescribed antibiotics for your infection?
Sue

Yes, I am more comfortable waiting for the experts. My pulmonologist was telling me about a new medication for M. lentiflavum that is nebulized instead of pills. I do like the idea of meds going directly into lungs. And you use it along with tobramycin. I love the 7% saline. I use it daily after albuterol. It works better for me than Mucomyst. Thank you again Sue! Oh, And thank you for the tip on saline & mycobacterium. Good to know!
Debra

Hi @squire123, I live in Glendale, Az. And I don’t know the name of new drug for M. lentiflavum. But I will post when I do. My doctors are sending me to NJH because they are the very best for lung issues in the US. I ask if I could go to Mayo(it’s 30 minutes from me), but docs said NJH is the only option for my situation. I have several lung issues complicating treatment. Along with a compromised immune system. I have 3 doctors working on my case so I do feel comfortable with their recommendations. This is all a little overwhelming at times, but I’ll do what I need to do to get better. I’d love to hear what treatment you end up with!
Take care,
Debra