New MAC Diagnosis

Hi Elaine,

Welcome to the message board! Technically, the diagnostic standard requires at least 2 positive sputum samples (out of 3 taken on consecutive days). If you've been determined to be MAC/NTM positive, at top tier labs used by centers such as National Jewish Health, they will also:

1. Determine the exact MAC species
2. Determine susceptibility to various drugs
3. Determine colony count

With respect to drug side effects, everyone's tolerance will be different. However, you will see many people posting here who have had little to no side effects. I have been on the Big 3 for over 18 months, and added Arikayce to my regimen for the past 9 months, and have had virtually no side effects. I, too, had no MAC symptoms and had been completely healthy up until my diagnosis.

Arikayce has been instrumental in converting my sputum to negative in a matter of a few weeks, and it has kept my sputum negative ever since. The meds have also shrunk and collapsed my cavity. I anticipate coming off the meds in a few more months. Given my experience with the meds, I only regret not having started the regimen earlier (I had been positive for almost 3 years before starting treatment).

Thank you!
I appreciate the information and for taking time to respond.

Hi Elaine, as
extracare808 said, it is important to get as much information as you can and see someone who specializes in MAC. Also, whether you take the antibiotic regimen OR decide not to be treated, it is really important to do airway clearance. For many of us this involves inhaling 7% saline solution with a nebulizer, using an Aerobika, and huff coughing. There is much information in the National Jewish Health website, NTMir website and BeClearToday.com. YouTube has many videos of webinars from NJH and NTMir.
7% saline helps make it inhospitable to the bacteria as well as helping get mucus out where the germs love to grow.
extracare808 has given their account of success with taking the antibiotics. I have been successful without taking the antibiotics and using airway clearance techniques with 7% saline.

I did 40 months on the big 3 with little or manageable side effects. Keep an eye on your eyesight, it is usually a color issue on 5% of ethambutol patients. It was the Amikacin IV and Arikayce that I could not tolerate, many folks do.

Thank you!
I appreciate the information you provided. I glad to hear you are doing ok without going on the antibiotics.

No, I would definitely not start treatment based off of one positive sputum culture. First you need to know what bacteria you have before you can start treatment as there are different treatment plans. What does your CT scan show? Do you have a Cavity? Many doctors will do a watch and wait before starting treatments. They will suggest doing Airway clearance to see if you can clear it on your own. It all depends on what you CT scan shows, your colony count, and what type of bacteria you have. Try to find a DR that is familiar with MAC. I was diagnosed in 2/20 and have never been treated. Hope this helps!

Thank you pop55,
This is very helpful to know!

A few months ago I was put on the big 3 antibiotics, but had to discontinue the Rifampin because it
tore my stomach up. So I am on only 2 daily antibiotics, but I am thankful for that, because it took me a
year to get the NTM diagnosis. I instinctively knew that I need an antibiotic for my crazy cough.
You need to get that second sputum test, so that you can start treatment. The sooner the better
because the infection is causing the excess mucus and damaging your lungs so that you can't
cough it up naturally. You've got to get the infection cleared up if you can. That's the first step.
Good luck and I hope you feel better soon.