MAC advise

Thank you do much for your thoughts. It gives me hope. My next appointment is Nov 1 and will see what she gas to say. Recently saw a video of Dr Hewitt and she mentions if after 6 mo still no negative sputum you should add amikacin. Do you have thoughts on that.?
Again thank you.

Avium most of the time but intercellular too

I was diagnosed 2 months ago so I'm fairly new at this. I didn't know there was a difference between Avium and Intercellular. My doctor has used both terms, but mostly he talks about MAC. What is the difference between Avium and Intercellular? Is the treatment the same for both?

There are hundreds of Mycobacteria species, and even more subspecies, so terminology gets confusing REALLY quickly. Worldwide, the most common are M. tuberculosis (TB) M. bovis (Bovine TB) & M. leprae (Leprosy.)

Then there are the species that we talk about here, NTM or non-tubercular mycobacteria, which, in spite of how active this group is, are quite rare (maybe 100,000 - 200,000 people per year) M. avium and M. intracellulare are the most common NTM, and have a number of further distinctions (subspecies.) M. aviums & M. intracellulare are often referred to interchangeably as MAC or MAI as they are closely related, and the diagnosis and treatment are very similar. There are other, less common species, some of which can cause even more serious infection than MAC, M. abscessus is one. And a few that may be present along with MAC but are not considered risky to humans.

So what exactly do we need to know? Mycobacteria can be SEEN on a slide in the lab, using an alcohol/acid precipitant on the slide. That is what the initial "positive AFB" lab results mean. At that point we know there is some Mycobacteria present in the sputum sample - but not which one, in what quantity, and whether it is one that needs to be treated.

So, an AFB positive specimen is sent to a lab that does a culture (grow it in a special medium for several weeks) to see how much bacteria grows. Once it has grown, the specific species & subspecies, can be identified. Next, recommended antibiotics are applied to the culture to see which ones kill your specific bacteria.

Wait, we're not quite done yet! Finally, your doctor evaluates the test results, your other symptoms, the severity of infection in your lungs, and your overall health to determine whether to begin treating you with antibiotics.

I bet that's a lot more than you wanted to know, but I hope it helps you understand why it takes so long to figure out what to do. The good thing is, MAC/MAI grow VERY slowly, so a delay in beginning treatment is not dangerous to you.

What stage are you at in the diagnostic process? Have you also been diagnosed with bronchiectasis?
Sue

Hi, MAC is hard to kill. Are you taking the meds everyday or three times a week? Ethambutol is based on your weight. I see my ID doc every month and he checks to make sure the ethambutol is at the correct dosage for my weight, even a couple pounds difference can make a difference in the dosage. For me, I think part of the exhaustion and malaise was due to the meds. I don't know anything about Duke, I haven't gone to NJH (National Jewish Health) but know they are #1 for NTM patients. I tried to get an appointment there while Covid was more active and it took over 7 months plus to get a response. by that time we knew I needed surgery so had the surgery at Mayo, which was closer. It just may take a long while to get in the NJH although things should be a bit better, It'll still take months from the day you send all you medical files in to when they will call to take you. Huff cough, boiling water for drinking, taking baths versus showers (cleaning shower heads regularly if you do), masking while gardening, making sure your Vit. D and Vit A are in normal range (I researched the later on PubMed and brought the articles to my MD who tested and found I was low on both. Basically doing everything you can to decrease your exposure since it's everywhere. I've been a long hauler and on five antibiotics besides using the vest and sodium chloride solution. Since surgery, I've been negative. It's made a world of difference finding that hidden spot and dealing with it. Only a couple more months and I'm off all meds! Praise God. Blessings to you on your journey, be patient and determined. Hope may seem impossible at times, but it's not, it's just around the corner.

Hi, MAC is hard to kill. Are you taking the meds everyday or three times a week? Ethambutol is based on your weight. I see my ID doc every month and he checks to make sure the ethambutol is at the correct dosage for my weight, even a couple pounds difference can make a difference in the dosage. For me, I think part of the exhaustion and malaise was due to the meds. I don't know anything about Duke, I haven't gone to NJH (National Jewish Health) but know they are #1 for NTM patients. I tried to get an appointment there while Covid was more active and it took over 7 months plus to get a response. by that time we knew I needed surgery so had the surgery at Mayo, which was closer. It just may take a long while to get in the NJH although things should be a bit better, It'll still take months from the day you send all you medical files in to when they will call to take you. Huff cough, boiling water for drinking, taking baths versus showers (cleaning shower heads regularly if you do), masking while gardening, making sure your Vit. D and Vit A are in normal range (I researched the later on PubMed and brought the articles to my MD who tested and found I was low on both. Basically doing everything you can to decrease your exposure since it's everywhere. I've been a long hauler and on five antibiotics besides using the vest and sodium chloride solution. Since surgery, I've been negative. It's made a world of difference finding that hidden spot and dealing with it. Only a couple more months and I'm off all meds! Praise God. Blessings to you on your journey, be patient and determined. Hope may seem impossible at times, but it's not, it's just around the corner.