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!

You are amazing if you can run 10k miles a day! Inspiring, and that bodes well for your healthy future. I do want to add, though, that both high blood pressure and type 2 diabetes CAN and ARE routinely reversed with lifestyle changes. And who knows what other diseases that are considered “incurable” are ultimately not! Just putting out that ray of hope. A friend of mine with very high cholesterol whose doctor said he needed to go on statins immediately reversed it completely in a matter of a couple of months without the statins. His doc was dumbfounded, of course, since most medical training is drug-oriented and most doctors are taught little about the healing possibilities of diet and other common-sense strategies. Luckily, with BE we already know that airway clearance, a lot of which is just age-old yoga postural and breathing practices, is immensely helpful, along with things like exercise and diet. And for me the best stabilizer of my mild to moderate BE, is hot water, a warm, soupy diet, followed by breathing and other exercises. So far no medication needed, and the hard knocks of bleeding episodes with hospitalization made it clear that those simple life habits can make all the difference and must be maintained. And to be clear, I know only too well that drugs have their place in disease treatment—antibiotics taken daily for two years saved my life from TB at age 20 and I get all vaccines and flu shots available, and go through the recommended round of antibiotics during exacerbations. I am forever grateful for these drugs, yet know that in many instances drugs are overkill, and stem from the bias of typical medical education. Learning all that I can to mitigate symptoms, worsening, with lifestyle changes is where I wish to put my attention. And even though I am no longer being able to eat ordinary meals as I was able to as recently as fifteen months—and miss that—it’s not too high a price to pay for relief from constant bouts of choking and monthly bleeds.
Wishing you all the best,

Aida