Recently diagnosed with MAC and nervous about meds

@gee12 Welcome to Mayo Connect and our MAC and Bronchiectasis support group. If you take a little time to explore, you will find there is much to learn, and whether or not to take antibiotics is one of the hardest decisions for many of us.

Here are two starting places for you
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/
and
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
There are articles here that cover when to treat, alternatives, and the basics of airway clearance.

One thing we have come to realize over the past few years is that antibiotics are not the only form of treatment. Daily airway clearance, using 7% or 3% nebulized saline solution, with a bronchodilator if warranted, can knock down the level of infection in some people so they require antibiotics (except possibly short-term during an exacerbation.)

I hope you find some information to encourage you. And certainly come on back and ask any questions that may come up - we have many helpful members whith a wide variety of experience.
Sue

I personally recommend airway clearance first and foremost whether you take the Big 3 or not. Airway clearance can help clear out the mucous which helps with keeping down infections. It may also help with your cough and general ill feeling. Using airway clearance is not an immediate acting miracle, it takes time and persistence but the efforts pay off in the long run.

Thank you so much for your input. I’m just getting started with the nebulizer. Hoping that will help with the cough. I notice some people recommending exercise. I get winded very quickly. If I try to continue, I get lightheaded. I use my Albuterol inhaler before I try to exercise but it doesn’t seem to help much anymore. I’m also on symbicort. My pulse ox is usually around 93 and Doc says I should get on oxygen if it gets below 90. Do you have any thoughts on that? I’m afraid of becoming dependent on it so early after my diagnosis. Thanks again. This is a great site. I’ve never heard of this disease before, it’s great to have people to talk to about it.

When in doubt about a pulminologist's recommendation then by all means see an ID Dr or a second opinion from another pulminologist.

70 years old, diagnosed with mac lung 6 months ago, on the big 3. I think it is wonderful that you are trying to exercise with the oximeter. It has helped me get my lungs stronger, so I can do more. Any activity you can do is beneficial. If I am working out, my oximeter can dip to low 80's, so I slow it down and the oximeter returns to normal. My pulmonologist thinks this is okay. If I had to use oxygen to exercise, I think I would use it. The exercise makes me feel better, and has many health benefits.

Are you nebulizing saline 3 or 7% after your albuterol treatment? If so, the airway clearance following the neb treatments should help you bring up the mucous and hopefully improve your breathing over time. I’m about to turn 74 and am on the big 3 since January. My ID doctor has spaced the meds out during the day and so far I have been able to tolerate them. My symptoms prior were fatigue, cough and weight loss. Hope this helps.

@gee12 @saravb and anyone else using a Pulse Oximeter.

Did you know that oxygen saturations normally varies by several percentage points? I can lower mine to the 80's by slouching in my chair and taking shallow breaths, then increase it to over 95 by sitting up and belly-breathing for several breaths. It is also normal for it to fall during heavy exertion and rise again as you "catch your breath" - a recovery which can take from a few seconds to a few minutes depending on your lung condition and fitness level. And during sleep it may fall - I can help that by taking deep slow breaths and stretching before I get out of bed.

Some things to know about home use pulse oximeters and measuring minute-to-minute oxygen saturation:
Home meters are designed to be used while sitting/standing still and can take up to 30 seconds to register an accurate reading; they are not meant to be used while moving.

For an accurate reading during exercise you need to use one that fits snugly to the fingertip - no gaps, no moving - like the ones taped on your finger during a treadmill stress test in the lab or clinic. Those more expensive machines are also designed to give more instantaneous readings.

The best advice from a pulmonologist was to check it in the morning after meds and airway clearance, then put it away unless you feel faint or fingertips/lips are tingling or changing color. (I used to know it was time to check my Mom's O2 sats when her lips became pale.)

Also, repeatedly focusing on one tiny aspect of self-care leaves less time and energy for the rest of it - airway clearance, getting some exercise, fixing healthy food. I can also increase anxiety about your condition...

Have you tried going through the day "listening" to your body and pausing to breathe deeply when you feel short of breath instead of reaching for the meter?
Sue

Hi. I'm 75 and was recently diagnosed with Mycobacterium Avium Complex. (That's on top of my long-time Bronchiectasis.) My doctor suggested Clofazimine, one of three antibiotics to be taken twice a day for 18 months, but I'm terrified of the side effects. (I don't have the names of the other two antibiotics yet.) Googling online, I found that Mullein Weed could cure certain Mycobacterium infections. I'm interested to know if anyone with this disease has looked into this option or even tried it.

My motto is "always take the doctors advice, if you don't like his advice then get a second opinion". Our conditions can require a team.

Thank you, Sue. This is very helpful information that I have not seen any place else. Mine is usually between 87 and 94. When it's at the lower end I can raise it by deep breathing. In the doctor's office, the nurse will often try another finger... and I will take some deep breaths and no one seems concerned. But those warnings on the internet to go to the ER if it is below 90 are certainly disconcerting.
Anna