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

@kathyhg Sorry you are experiencing nausea. You are wise to have regular checks with a GI specialist. I have Bronch, and I am colonized with m. Abscessus in sinuses as well as lungs. I’m on Gentamicin as a daily maintenance antibiotic, taken as an inhalant. Have not had to start “Big 3”, by God’s grace and daily airway clearance. My docs are at Stanford.

I have significant, periodic, bouts of GI pain, irregularities, and at times nausea. Been scoped from both directions, all they see is some areas where bleeds have healed, and diverticulosis. So they’ll Diagnose it as a bout of “gastroenteritis”. The symptoms are becoming more frequent, and the bouts last longer: the last one was 3 months!

After years of trouble with constipation, I take Miralax daily, and it has been a life-changer to have a daily BM! Who knew what joy?? HA!

They checked me for ciliary dyskinisia, and I don’t have it. They’ve done genetic testing for CF, and I do have a questionable result so they will explore that further soon.

The ENT accidentally hit a nerve during my July Endoscopy, and I had 4 weeks of facial pain....and non-stop nausea. The doctor reminded me sometimes pain can cause nausea. It passed.

I still work full time, I was a college athlete, still exercise daily and enjoy grandbabies, the best medicine of all. Would have never dreamt I’d be alive after being deathly ill in 2015-2016.

I share all this in hopes of helping you or anyone else hang on, have hope, and in hopes we can share clues to help our doctors put the pieces together and make things easier for those who come after us. Blessings, Brenda

My nausea isn’t extreme but it isn’t caused by antibiotics because I’m not on any yet. I’ve lost about 20 pounds because there are times food doesn’t interest me. My MAC symptoms are mild compared to what others are experiencing. Best wishes!

@gj53, Hi there. Try scrolling to the top of this thread, there, you should see a box on the right hand side of the page it will say oldest to newest with a drop arrow. Press the arrow and another choice will drop down. Click on the 'Newest to oldest' choice. That will get you there.

@essbee .... my nausea is EXTREME. I have done EVERYTHING I know to do. I am not on any medicine as I could not tolerate it in 2015. My sputum culture just came back positive... after being negative in April. I have no symptoms other than the nausea.
Sofran is not touching it!

@anniepie, Hi Annie. I am trying my best to stay well! I do not understand why your health care system wouldn't do a susceptibility test on all three of the drugs. I do not know so much that Dr. Leventhal was courageous for prescribing me the way he did; as the ATS lobby doesn't affect him. He worked for Mayo Clinic with is a non-profit research institution. Which means they try different things to treat diseases in order to discover better ways to combat them. He told me when I first saw him that we could try this method and if it did not work, then we could go to the standard way of using the Big 3. I think that some strains of mac are more serious and my regimen probably wouldn't get rid of it. Dr. Leventhal retired this past August, so I am curious about meeting his replacement this summer. He told me that he had been grooming her with his thought processes on how to treat NTM (mac). I read some of her publications and she seems to be very passionate about this particular disease. Are you free of the smoke from the wildfires in your country? I hope so!

@jml060448 Hi John. Did you get a chance to visit the Discussion Board and see the list of topics?

@kathyhg ... I too am EXTREMELY nauseated ... debilitating !
I could not tolerate the medicine in 2015 due to nausea. My nausea is debilitating today.
Nothing helps!😩

I am so sorry you are experiencing such difficult symptoms. This disease affects each of us in somewhat unique ways. I guess all we can do is let doctors try whatever is out there to help us control the worst symptoms. It’s my understanding that there is no cure for MAC and the best we can hope for is remission for as long a period as possible.......usually over and over again. Personally, experiencing a positive quality of life is more important (to me) than being cured. I believe that is possible but certainly involves trial and error experiences! Best wishes!

@kathyhg Sorry to hear that, I only had nausea on the meds not off but I found ginger lollies and licorice and ginger tea helped alot.

@windwalker Terri, are you talking about the Mayo Clinic in Jacksonville? What is Dr. Levanthal's replacements name please?