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

Thanks Diane @goatlady, your thoughts and prayers mean a lot to me. Annie x

Thanks very muc Irene @irene5 - hugs to you, Annie x

Hi Heather @heathert thanks for caring. Yes my pulmo doctor has suggested another clinical trial. But it's an early phase trial and who knows if it will work as well, with fewer problems for me, Unfortunately at the moment, something else has come up with my health and that needs to be investigated now. I don't know if I will be eligible. We'll see, Hugs, Annie x

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

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

Hi Annie, I hope you get to go into the nitric oxide trial soon, breaking through the biofilm sounds great. Thank you so much for the information on it. I do not get tested again for 6 months so I would probably miss it also and like you say it is really for Aussies, not that I would mind living there for a bit!
I hope your new health issue is going well for you and I wish you all the best with it. Keep in touch and take care.
Huge Heather the Kiwi.

Hi folks, is anybody else using 6% or 7% saline in their nebuliser every day?
I think it helps quite a bit. My lungs are clearer now after using it for a few weeks.

I was on 3% saline but couldn't clear enough sputum at all with that.
The first few inhales make me cough a bit but it is fine after that.

I hope all of you are going okay.
Virtual hugs to everyone
Annie

@anniepie Yes I neb 7%saline twice a day, I feel it is good and others swear by it. So glad you have moved to 7%.

I just received an email newsletter from NTM Research and Information that I thought would be good information for everyone. One subject is the shortage of sodium chloride and the other is a research study.

National Jewish Health has sent out the following information regarding the current shortage of inhaled hypertonic saline:

Currently there is a nationwide shortage of sodium chloride. This is impacting patients with bronchiectasis who perform twice daily airway clearance with hypertonic saline which is also known as sodium chloride. The standard of care is hypertonic saline 7% but it also comes in 3%, 10% and 0.9%. It is not typically advised to use 10% for self-administration; 0.9% or 3% would be acceptable substitutes. All of these solutions are formulated for inhalation. It is STRONGLY discouraged to create your own solution as it could cause serious harm to your lungs.

We are currently advising patients to continue use of their flutter devices and vest therapies twice daily or as prescribed and resume normal airway clearance routine once these products become available again.

NTM Info & Research has reached out to senior government officials currently working on supply chain issues to make them aware of the severity of this shortage and its significant impact on the health and well-being of patients. We will continue to monitor the situation and provide updates as we receive them.

Now recruiting participants for an interview and questionnaire-only research study of NTM MAC lung disease

We are currently recruiting patients with NTM MAC lung disease to participate in a research study being conducted by Evidera, a research organization, with funding from AN2 Therapeutics, a biopharmaceutical company.

Study Goals: The goal of this interview study is to better understand the symptoms and impacts of MAC lung disease to help Evidera pick or create questionnaires to be used in treatment studies of this disease.

Study Activities: If you qualify and choose to participate, you will be asked to do the following:
• Have your medical team complete a brief form that confirms you meet study requirements
• Sign an electronic consent form and complete a few questionnaires about your health and your demographics (age, sex, race, etc.)
• Participate in a telephone interview lasting about 60 minutes with a researcher from Evidera. During the interview, you will be asked to describe the symptoms and impacts you experience as a result of MAC lung disease. You may also be asked to discuss a new questionnaire about MAC lung disease symptoms to make sure the questions make sense and are relevant to your experience.
You will not receive any treatment as part as this study. You will receive $200 if you complete all of the above activities.

To Learn More: If you are interested in learning more, please contact Evidera at NTMlungstudy@ppd.com or toll-free at 877-888-3232.
@lindam272

I believe my MAC is definitely connected to GERD which I also have. Also it seems I have constant sinus infections which may be connected. Ironically, I had to take Ceftin on Oct. 27th last year and didn’t start coughing again until just recently. Will see ENT again next week for Sinus.