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

Good morning Anniepie, Don’t give up hope! I had to stop all of my meds after 6 months because of side effects. That was about a year ago and I have been using the nebulizer, along with Aerobika and manual percussion twice a day since then. I started with 3% but transitioned to 7% after reading about it here. I also made significant dietary changes, started taking supplements (that I read about here and had confirmed by my naturopath) and made more of an effort to get cardio and strength building exercise every day so I could challenge my lungs and strengthen my body. It is much more work and effort than taking the big 3 but my health is better now and my viral count is consistently lower. I’m grateful that my heart rhythm has gone back to normal but I still have hearing loss and tinnitus.

Hi Sue. I am back on the tea myself. I find it very helpful.

Anniepie, I am with Irene on this, perhaps ask your dr about Arikayce. There are quite a few of our members here that have gone on that med with success. Please keep me in the loop as to what your dr has to say about it.

I'm sorry you had to stop the meds after working so hard to get rid of the MAC, but there is hope. If you are still symptomatic, I suggest you do ask about Arikayce as suggested. I also had to stop the meds due to side effects while still positive last winter, but I no longer had symptoms. So using 7% saline nebs and airway clearance seems to have kept me on a decent track. I also use "Breathe Easy" tea every day to help keep my lungs clear, nebulize levalbuterol when short of breath, and do daily exercises and walking to keep my lungs strong.
Good luck in finding a regimen that will work for you.
Sue

Can you please tell me what Arikayce is? My local Doc.'s do not want to treat the MAC saying it's very hard to get rid of and the side effects from meds would be too hard on me. But maybe Arikayce is an alternative I do not know about. Please advise

Hello MAC friends, Also, Traditional Medicines makes an organic Peppermint tea that helps keep my lungs open all day. I sip it throughout the day.

@janrn1 Arikayce is an inhaled liposome suspension of amikacin. Amikacin is an antibiotic that has been around for quite some time. When you inhale Arikayce, the liposomes containing the medicine travel into your lungs. Once inside your lungs, they release the medicine to fight MAC/MAI. It is a different yet effective way to fight the disease. Arikayce is in a phase three clinical trial. It is an FDA approved treatment plan in patients who did not respond to a combination antibacterial drug treatment alone. I have been on this med along with two of the Big 3 since June. irene5

Thanks Terri and thanks so much everyone else.

Yes I will try to get onto Arikayce -- that was planned anyway for a few months time. But I think I will have to take something else as well.
I might go back on the Ethambutol. (Still scared a bit every time I take it. But the heart problems that happened with the Macrolides -- Azithromycin and Clarithromycin -- and with Clofazimine freaked me out).

Has anyone ever tried Bedaquiline??? It's a TB drug but in more recent studies it appears also to work with MAC and with Intracellulare in particular.

You're all so kind -- I can't thank you all enough for being there for me.
Virtual hugs, Annie x

Breathe easy tea have any side effects.

In 2 years, have not had any ill effects at all, nor have my husband or daughter. We each use one or two teabags a day. Some people have expressed concern because it does contain licorice root, and a while back the news had an article about a man dying after eating licorice - but he was eating over a pound a day - not the tiny amount in the tea.
Sue