MAC diagnosis with w/limited continued symptoms

Posted by carriew @carriew, May 19 3:45pm

My mother is 86. A year ago, she had a sputum test, which confirmed the diagnosis of MAC. She had a chronic cough and was losing weight. The pulmonologist recommended a sputum test, and the diagnosis was confirmed. After the bronchoscopy, her coughing symptoms subsided, and we were told that this was probably due to the procedure removing the mucus from her lungs. We have also consulted with an infectious disease doctor who recommended monitoring her with scans every 3 months. We connected with a nutritionist about 6 months ago, who helped her stabilize the weight loss, but with minimal weight gain. She just saw her pulmonologist today, and the report was that the disease was spreading, but not at an alarming rate. His initial recommendation today was to reconnect with the ID doctor about treatment. My pushback was, and still is, that she is not presenting with symptoms. She doesn't cough and may be slower and short of breath, but only when she is doing too much, like using stairs. She doesn't require assistance, but she gets tired more easily. But she is 86. The doc agreed that we would wait another 3 months to reevaluate. She has had a history of gastrointestinal issues that have been resolved (constipation), and she is currently being treated for glaucoma, liver disease, and has stage 3 kidney disease. Our concern is the side effects of the multiple antibiotics on her organs and her ability to tolerate them while being able to maintain and possibly gain her weight back. She lost 20 pounds over the past 1 1/2 years (from 130# to 112# now). Her quality of life is very good right now but we were told that could change at any time and the antibiotics might be that much harder to tolerate if she is having respiratory issues as well. Not sure what question I have for you all except, does anyone have any experience with putting off the regimen at an advanced age like her? Just looking to see if we are being reasonable. In general, her pulmonologist and ID doctors have been very straightforward with us, but nobody knows what life will be like when this goes untreated if the symptoms start. Thank you for reading.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Profile picture for carriew @carriew

That is a great idea and makes total sense that they are "doing" their jobs. I have accompanied her on visits to the ID and pulmonologist, but not her primary care doctor lately. Out of the three, he appears to be the least open to me accompanying her on her visits, probably because I ask a lot of questions. I see you are a volunteer mentor; thank you for your response. How do I go about identifying a palliative care specialist?

Jump to this post

The infectious disease doctor told me that I had mac in my sputum non-contagious not even tuberculosis yet just MAC.

ALSO, S. MALTO PHILIA.

MY LUNGS BURN SOMETIMES SOMETIMES THEY DON'T. I DON'T KNOW IF ANYBODY CAN COMMENT ON THAT? I'M DIABETIC. THEY ALSO FOUND ASPERGILLUS IN MY LUNGS.

IF ANYBODY HAS ANY INSIGHT ON WHAT TO DO ABOUT THIS THAT WOULD BE GREAT THANK YOU

I DO WANT TO ADD THAT UPON MY RESEARCH I FOUND THAT BEE PROPOLIS BURNSLEY BACTERIA IS PROTECTIVE BIOFILM THAT PREVENTS THE ANTIBIOTICS FROM WORKING. I'VE READ WHERE THE BEE PROPOLIS AUGMENTS THE ANTIBIOTICS ABILITY TO PENETRATE THE BACTERIA BECAUSE OF THE BEE PROPOLIS BURNING OFF THE BIOFILM OR BIOSHIELD OF BACTERIA. LET ME KNOW IF ANYBODY HAS HEARD ABOUT THIS. I'VE BEEN DOING IT FOR A WHILE. ANTIBIOTICS SEEM TO MAKE ME WORSE SO I NOW I'M JUST ON STRAIGHT B PROPOLIS BUT I ALSO AM LOOKING INTO OTHER NATURAL PATH REMEDIES. THANK YOU

REPLY
Profile picture for richkey @richkey

The infectious disease doctor told me that I had mac in my sputum non-contagious not even tuberculosis yet just MAC.

ALSO, S. MALTO PHILIA.

MY LUNGS BURN SOMETIMES SOMETIMES THEY DON'T. I DON'T KNOW IF ANYBODY CAN COMMENT ON THAT? I'M DIABETIC. THEY ALSO FOUND ASPERGILLUS IN MY LUNGS.

IF ANYBODY HAS ANY INSIGHT ON WHAT TO DO ABOUT THIS THAT WOULD BE GREAT THANK YOU

I DO WANT TO ADD THAT UPON MY RESEARCH I FOUND THAT BEE PROPOLIS BURNSLEY BACTERIA IS PROTECTIVE BIOFILM THAT PREVENTS THE ANTIBIOTICS FROM WORKING. I'VE READ WHERE THE BEE PROPOLIS AUGMENTS THE ANTIBIOTICS ABILITY TO PENETRATE THE BACTERIA BECAUSE OF THE BEE PROPOLIS BURNING OFF THE BIOFILM OR BIOSHIELD OF BACTERIA. LET ME KNOW IF ANYBODY HAS HEARD ABOUT THIS. I'VE BEEN DOING IT FOR A WHILE. ANTIBIOTICS SEEM TO MAKE ME WORSE SO I NOW I'M JUST ON STRAIGHT B PROPOLIS BUT I ALSO AM LOOKING INTO OTHER NATURAL PATH REMEDIES. THANK YOU

Jump to this post

I am curious about your diagnosis - can you tell us how the infections were found, and what led you to see a doctor? Was a CT scan done to inspect the condition of your lungs?

Whish antibiotics were prescribed, and how long did you take them?

As for using bee propolis as a treatment, here is what one major clinic has to say:
https://health.clevelandclinic.org/propolis

REPLY
Profile picture for carriew @carriew

Interesting about the shelled peanuts. Are you having symptoms besides the weight loss and what antibiotics are you on if any and how are you tolerating them? Also what is your age? Is anyone using a compression vest in this conversation? If so is it helping?

Jump to this post

Hi Carrie I thought I answered this but I don't see it! Yes, symptoms from meds mostly....more coughing, tight chest (Arikayce!!) nausea (Clofazamine) +Nuzyra (non side effects) These are in addition to my maintenance meds. I have been putting weight back on now. I'm 71
Hope this helps 😎

REPLY
Please sign in or register to post a reply.