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Is there any successful story ?
MAC & Bronchiectasis | Last Active: 1 hour ago | Replies (15)Comment receiving replies
@laureltn, thanks so much for your long message. I realize that NTM is not curable, like high blood pressure or diabetes, it is chronic disease. I agree with everything you said - prevention is the key. But high daily maintenance is the best strategy to control it and co-exist with it.
It is so admiring that you hold such a positive and active philosophy - seems Appalachian Trail is so amazing! You must enjoy it a lot and I wish you continue this amazing activity! And I wish you can stay free for a much longer time after your second treatment. In my experience, exercise is necessary but balance may work better. I started jogging in Jan 2022 and by April I can run 10K a day ,but in June my NTM was developed. Of course that is my personal experience.
The mystery for me is I went to NJH for all tests and except silent Gerd, all other tests are negative. My immune is also normal. So I always hope there is a cure for me, but the doctor also confirmed even with surgery, it is not a 100% guarantee.
I will hold a realistic expectation and perform daily maintenance. The great thing for NB patients is that some of them are good for 10 years after 1st treatment.
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It's good you went to NJH. I was seen by Dr. Kasperbauer in 2020, but she released me back to Vanderbilt because she said I was well on the way to being cured. Both my doctors thought I'd be a "one and done" because of my overall fitness, health, etc. I'm not immunocompromised either, unless you count the decline that comes with menopause and aging. We finished the AT in September of 2022. I may be the first BE/NTM patient to finish the whole thing, with at least 600 miles while on the Big 3. 🙂
Even though my treatment followed all the protocols, it's possible the MAC was still there, just dormant. I was developing resistance the second time around, so we dropped rifampin and added Arikayce and that did it. One day at a time!