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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)
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@heathert

oh Annie so sorry to hear something else has come up, life always throws us curve balls unfortunately, I hope it turns out to be nothing for you, I had a lump in my thryoid last year, which was a real worry but it turned out to be a cyst, these things can be so scary, I feel for you.. Good that there is another trial for MAC, do you know the name of it.I wish you all the best to be eligable to get into the trial . Take care and keep in touch, Hugs Heather

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Replies to "oh Annie so sorry to hear something else has come up, life always throws us curve..."
anniepie | @anniepie | Jul 5, 2021

Thanks very much Heather @heathert.

It is the USA BeyondAir Clinical Trial (Nitric Oxide) based in Australia at Greenslopes Private Hospital in Brisbane. (It is also being run in the USA).

(I don't know if I will be eligible now -- it could take a few months to sort out what's happening with this new health problem).

In earlier studies, Nitric Oxide has been shown to kill NTM and some other bacteria and break through biofilm.

The Gallipolli Research Centre at Greenslopes Private Hospital is managing it in Australia. It is strictly ONLY for medically-treated but Refractory (Unresponsive) NTM infections, and I think also for Cystic Fibrosis or COPD patients with unresponsive infections.

But I think this clinical trial is only based in two places: in Brisbane Australia and in the USA.

For participation in the trial in Australia, I think you'd need to live in Brisbane for a while because the trial requires you to become an admitted patient in the Greenslopes Private Hospital (free of cost) for 1 week. Then for two weeks, use BeyondAir's special nitric oxide machine 4 times each day (@40 minutes each time). Then use that machine twice per day (@40 minutes each time) for around 2 or 3 months..

A general phone number for Gallipoli Research Centre in Brisbane, Australia, is +61 7 3394 7284 if you need more information.

Hugs to you across the ditch, Annie x

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