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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
Replies to "Hi @squire123, I live in Glendale, Az. And I don’t know the name of new drug..."
Hi, I'm about a year late on seeing this, but I also live in Glendale, AZ. In 2018 I was diagnosed with Nocardia Wallaci, which is a rare NTM lung condition also found in soil and water. After about a year of treatment with Azithromycin, Rifampin and Ethambutol while using saline & and aribeca device, I tested negative for almost 6 months. At my next test I was then positive for MAC. I used the above treatment for over 3 years and was MAC free for about 9 months. They paused my medication, and the MAC came right back. When they put me back on the meds about 1 week later I was in the hospital with kidney and liver failure. Rifampin CAN NOT be restarted in many patients once it has been stopped because it can cause very serious kidney and liver issues. The Dr at Mayo was apparently unaware of this issue. I was in the hospital on dialysis for weeks. This also led to pulmonary thrombosis which required surgery and another hospital stay. I wanted to give you my history so you can be aware of the problems that can be caused.
When I recovered enough to begin taking medication again I was placed on the new inhaled Arykace. It is an antibiotic that has been on the market for some time but just recently became available to be inhaled. It requires a specialized nebulizer which is provided with the medication. The great news is it did kill the MAC but it also damaged my hearing which azithromycin can do as well. Not everyone is impacted like I was, but it was a tradeoff to kill the MAC. You still need azithromycin and ethambutol with the Arykace. I understand there are some recent studies that indicate that a two med regimen might be effective.
I was MAC free for 9 months and still am but now I have Mycobacterium Lentiflavum showing up in my last 4 tests. For me it grows even slower than MAC did.
Don't know what treatment will be now, just waiting for another appointment.
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Debra, wow, I was also over whelmed and am now taking Prozac. Helpful for anxiety. Interested in your journey, especially NJH. I'm also considering going, as I am in initial stages of the disease. Keeping well is my goal. So many good suggestions, I woul like to keep in touch with you. Barbara