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Sat, Jun 29 2:11am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi friends, here's some good news: This month (June 2019) the Gates Foundation licensed a lot of further clinical testing of SPR720 for TB. http://www.tbonline.info/posts/2019/6/23/spero-therapeutics-announces-collaboration-bill-me.

SPR720 has also had demonstrated research success (in vitro and in vivo) with NTMs . It's been shown to be safe as well as clinically effective against MAC/MAI and Abscessus. https://sperotherapeutics.com/pipeline/spr720-non-tuberculosis-mycobacterium/.

So we might finally see some new drug action a lot faster than we would have if left to Big Pharma alone!
Hugs to all and all the best
Annie

Wed, Jun 19 1:05am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@lampstone Thanks for letting us know this Pat — it explains a lot to many of us. Please keep in touch. Your advice and kindness is much appreciated. I wish all the best for you — please let us know what comes next and how you're going. Hugs to you

Wed, Jun 19 12:34am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@stsagris Sorry to hear about your step-mother's anxiety — but we sympathise and understand. I agree with others about the psychological side effects of the Big 3. But please also note that getting this diagnosis, and finding out about the risks and how weak your immune system is now, often causes a great deal of anxiety and emotional distress too — at least for several months. This can take time to adjust to, but the person with the illness will slowly begin to adjust over time. Best of luck to you and your step-mother

Sun, Jun 9 3:12am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@heathert Thanks Heather — you are always so kind and helpful. Hugs

Fri, Jun 7 5:24am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@windwalker Terri, you've said it took you 12 months to seroconvert when you recovered from your illness. And I know it has taken a while for others too.
I just had my scans after the first 6 months of treatment with the Big 3.
I didn't expect to have seroconverted yet, but I kind of expected some improvement. It was a real shock to find out from the pulmonologists there's been no improvement at all.
I've fully complied with the treatment, but it hasn't reduced the amount of nodules and granulomas in my lungs. M. Intracellulare is tough to get rid of because it's mostly in a biofilm state, but I was hoping for a little improvement.
Did many of you show at least some improvement after 6 months? Or did it take much longer? Did anyone with no improvement at 6 months, later go on to recover?
What did you find to help you stay positive and keep waiting for improvement?
I really appreciate all your help and kindness.