New Diagnosis of MAC/MAI & I'm scared

@cindyrue
Hi there, like you I keep pushing myself to work, work out, and I am not being treated with The Big 3 right now. YES I agree at times my other body systems are being attacked, especially GI tract, though the research says the disease only spreads outside the lungs in those with immunodeficiency (HIV). Just got another sputum sample back with more fungus, so my ID doctor just ordered another sinus & chest CT scan in hopes of determining if it is just a colonizer, or if it is causing disease. Just had both scans in January, I will glow in the dark before long, LOL! Prayers for all.

@migizii it was interesting reading your input about outcomes from your sputum test, cindyrue, asi have not heard anyone else discuss getting a “colonizer” type outcome......which is what happened to me with my only sputum tests, to date. Even though I asked my doctor what all this means and I seem to understand what it means, does colonizing cultures lead to disease?

@migizii Hi there. I cannot answer this question. I feel like colonizing can't be a good thing. These critters are slow growing, but they create a tough outer shell called a 'biofilm'. Many times this biofilm protects this bacteria from antibiotics, heat, chlorine, etc. I freaked out when I was told I had 4 colonies. But then, we have a member who had over 100! In all of my reading over medical journals and websites,; none really elaborated on explaining colonization. This sounds like a good question for Dr. Falkinham.

@migizii Hi there. I cannot answer this question. I feel like colonizing can't be a good thing. These critters are slow growing, but they create a tough outer shell called a 'biofilm'. Many times this biofilm protects this bacteria from antibiotics, heat, chlorine, etc. I freaked out when I was told I had 4 colonies. But then, we have a member who had over 100! In all of my reading over medical journals and websites,; none really elaborated on explaining colonization. This sounds like a good question for Dr. Falkinham.

@migizii wow! Thanks for taking all this time to look into my question! Who is this doctor you speak of? How would I contact him? This is a wonderful group and I’m so glad to be a part of it!

Dr. Joseph Falkinham is a research professor at Va. Tech whose main field of study is MAc/NTM mycobacteriums. He often speaks at the NTM conferences and advises National Jewish Health. He is very good at answering his e-mails, but I would read things he has written or watch a video of him speaking first before contacting him. That way, you are not asking redundant questions of him. I think this colonization question is a good one to ask him. Here is his e-mail address: jofiii@vt.edu

@ann0616 Sound like what happened to me. Big pneumonia out of the blue. Hospital then discovered MAC. Watched with CT for about 2.5 years and there was slight worsening over time until finally I was put on the Big 3. I am finishing Month 15. The past 3 months have been a bit harder to take. I have a CT next month and it will be decided if I can come off them.