What are some of the most common Mac symptoms people experienced when they were diagnosed or when having a flare up? For me it's the mucus in the throat that makes me clear throat and cough.
I kept getting recurrent pneumonias, discoloured mucus, fatigue, loss of appetite. Also had pain and burning in lung/chest area most effected by MAC.
All that diminished once I began 3 antibiotics and have ceased after about a month after began treatment.
What are some of the most common Mac symptoms people experienced when they were diagnosed or when having a flare up? For me it's the mucus in the throat that makes me clear throat and cough.
I had a cough, clearing my throat, night sweats, and lost weight. I seemed to have more hair in the drain but I wasn’t sure if that was from MAC. I was on meds. For 18 mos. And did not have a good team for the first 8 months… I learned lots from this site and found a better doc. I survived the meds., although it wasn’t fun. I have numbness in my toes but I generally feel better.
Hi both
Thanks for your comments. I am pleased the Big 3 are ok for you.
I am just not sure they will be ok for me, at the moment.
Here in the UK the NHS, in some departments, are really under pressure especially respiratory after Covid. My recent respiratory physio appnt was cancelled and rebooked for June 2025!
Hopefully the USA Big Pharma will invest in research and better drugs for MAC as it is on the rise around the world, especially Hawaii and Korea.
It is doubtful if I will be around to benefit but the next generation might..
Stay well and thanks to the Mayo connect Team for all your information, support and sharing.
SP
Hi Barbara and SP. I hear you re reluctance to take big 3, I was too. I also wanted to stop progression of MAC. So, I got baseline hearing test, eye exam and reg blood work. So far, 4 months in and no neg impact on hearing or sight. If you r open to considering antibiotics, those baselines can give you a greater sense
Of security.
Thanks so much. Yes I have had the baselines due to all that was kindly said on this site, plus the blood work. The doctor did not suggest doing it but if you don't how would you know if the antibiotics were the cause of a change or not with the eyes and hearing.
Reality from what I understand is that most people do not experience all the things that we worry about with the hearing and eyesight due to the antibiotics....but one might just turn out to be that 1%..who do. Oh well.
Barbara
Hi both
Thanks for your comments. I am pleased the Big 3 are ok for you.
I am just not sure they will be ok for me, at the moment.
Here in the UK the NHS, in some departments, are really under pressure especially respiratory after Covid. My recent respiratory physio appnt was cancelled and rebooked for June 2025!
Hopefully the USA Big Pharma will invest in research and better drugs for MAC as it is on the rise around the world, especially Hawaii and Korea.
It is doubtful if I will be around to benefit but the next generation might..
Stay well and thanks to the Mayo connect Team for all your information, support and sharing.
SP
Yes so often we are just a year or so too late,, "not around" when they do find answers to many things. However, how wonderful that they do and hopefully they will with BE/MAC etc. etc.
Getting appointments here in the USA can be a problem also. With many people aging and then with all the health changes that come with aging, with the way we live our lives today, with many of the best doctors and all their years of experience retiring...especially after the Covid demands put on them we are in a period of time that there are too many patients for too little professionals and therefore we are having to see professionals with less time in the field and fewer professionals, in general available. So, we have to come to sites like this and help each other and also do our research etc. etc.
Wow, I knew about Hawaii but not Korea....although I have understood BE/MAC is becoming more prevalent world wide. That should get the pharmaceuticals interested in more research! Hope so.
Wishing you those good days we all wish for.
Barbara
@maliko Overall feels much solid, fatigue is gone, wheezing is gone, though occasionally have eye flashness, and slight hearing decline after four months of three antibiotics daily + amikacin inhalation three times a week.
I remember distinctly it taking a little over a month before my chest pain when lying down improved. Because it’s a slow growing infection, it’s slow to go away…. I recall thinking at 6 mos I was good:) it gets better!
I’m new to all of this so please bear with me. I was diagnosed in January, 2024 with M. abssessus and bronchiectasis accidentally after abnormal chest CT and subsequent BAL. I was asymptomatic until this summer (July I think). Symptoms began with cough, fatigue, night sweats. Infectious Disease and Pulmonary advised early intervention with 3 antibiotics (not sure if they were the “Big 3”) Azithromycin, omadacycline, and linezolid. Due to contraindicated linezolid and current Wellbutrin, and having serotonin syndrome after 2 days, switched to tedizolid. Tedizolid gave me neuropathy in feet after 1 month so it was d/c’d. 2nd BAL showed MAC and inhaled amikacin was added daily to already daily azithromycin and omadacycline. Have had baseline and 1 follow-up hearing test. All good there. Now being advised to add ethambutol with a follow up BAL in 1 month. My concern is this… just in past few days my vision in my right eye has declined so I am unsure about adding ethambutol. I am scheduled for baseline eye exam this week. Not sure what is the vision decline culprit. (To complicate further, I have also been on Wegovy for weight loss and am taking my goal weight maintenance dose.) I feel like I have a good team of doctors but also feel kind of left in the dark as to prognosis, which side effects are concerning for each med (besides the obvious vision, hearing and neuropathy, not to mention the torturous serotonin syndrome I experienced). There are so many overlapping effects and I feel miserable. I don’t feel like I have gotten enough education on expectations, prognosis, and risk/benefits of this multi drug therapy. I asked my ID doctor if this were his own wife would he be recommending such treatment. Yes was his answer. I just don’t know enough to even know whether to continue to treat and just suck it up for the 12-24 months or what the alternatives even are. If it makes any difference I am a 55 year-old female ex-smoker for over 20 years. If you’ve read this far, thank you. Any and all feedback appreciated.
I’m so sorry you’re dealing with this. I have not had to make these decisions yet since my MAC cultures were negative. I’ve been on the site for about 18 months. A couple bits of info might be helpful to those responding. Do you have cavities? Are you in the care of a team that sees a lot of MAC patients?
Good luck to you.
I’m new to all of this so please bear with me. I was diagnosed in January, 2024 with M. abssessus and bronchiectasis accidentally after abnormal chest CT and subsequent BAL. I was asymptomatic until this summer (July I think). Symptoms began with cough, fatigue, night sweats. Infectious Disease and Pulmonary advised early intervention with 3 antibiotics (not sure if they were the “Big 3”) Azithromycin, omadacycline, and linezolid. Due to contraindicated linezolid and current Wellbutrin, and having serotonin syndrome after 2 days, switched to tedizolid. Tedizolid gave me neuropathy in feet after 1 month so it was d/c’d. 2nd BAL showed MAC and inhaled amikacin was added daily to already daily azithromycin and omadacycline. Have had baseline and 1 follow-up hearing test. All good there. Now being advised to add ethambutol with a follow up BAL in 1 month. My concern is this… just in past few days my vision in my right eye has declined so I am unsure about adding ethambutol. I am scheduled for baseline eye exam this week. Not sure what is the vision decline culprit. (To complicate further, I have also been on Wegovy for weight loss and am taking my goal weight maintenance dose.) I feel like I have a good team of doctors but also feel kind of left in the dark as to prognosis, which side effects are concerning for each med (besides the obvious vision, hearing and neuropathy, not to mention the torturous serotonin syndrome I experienced). There are so many overlapping effects and I feel miserable. I don’t feel like I have gotten enough education on expectations, prognosis, and risk/benefits of this multi drug therapy. I asked my ID doctor if this were his own wife would he be recommending such treatment. Yes was his answer. I just don’t know enough to even know whether to continue to treat and just suck it up for the 12-24 months or what the alternatives even are. If it makes any difference I am a 55 year-old female ex-smoker for over 20 years. If you’ve read this far, thank you. Any and all feedback appreciated.
Some additional information is that I am unsure if they said I have cavities or not. There are for sure nodules. My team does treat a lot of MAC patients and consults with NJH regularly. All courses of treatment so far have been per NJH’s recommendations.
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I kept getting recurrent pneumonias, discoloured mucus, fatigue, loss of appetite. Also had pain and burning in lung/chest area most effected by MAC.
All that diminished once I began 3 antibiotics and have ceased after about a month after began treatment.
-
Like -
Helpful -
Hug
5 ReactionsI had a cough, clearing my throat, night sweats, and lost weight. I seemed to have more hair in the drain but I wasn’t sure if that was from MAC. I was on meds. For 18 mos. And did not have a good team for the first 8 months… I learned lots from this site and found a better doc. I survived the meds., although it wasn’t fun. I have numbness in my toes but I generally feel better.
-
Like -
Helpful -
Hug
1 ReactionHi both
Thanks for your comments. I am pleased the Big 3 are ok for you.
I am just not sure they will be ok for me, at the moment.
Here in the UK the NHS, in some departments, are really under pressure especially respiratory after Covid. My recent respiratory physio appnt was cancelled and rebooked for June 2025!
Hopefully the USA Big Pharma will invest in research and better drugs for MAC as it is on the rise around the world, especially Hawaii and Korea.
It is doubtful if I will be around to benefit but the next generation might..
Stay well and thanks to the Mayo connect Team for all your information, support and sharing.
SP
Thanks so much. Yes I have had the baselines due to all that was kindly said on this site, plus the blood work. The doctor did not suggest doing it but if you don't how would you know if the antibiotics were the cause of a change or not with the eyes and hearing.
Reality from what I understand is that most people do not experience all the things that we worry about with the hearing and eyesight due to the antibiotics....but one might just turn out to be that 1%..who do. Oh well.
Barbara
Yes so often we are just a year or so too late,, "not around" when they do find answers to many things. However, how wonderful that they do and hopefully they will with BE/MAC etc. etc.
Getting appointments here in the USA can be a problem also. With many people aging and then with all the health changes that come with aging, with the way we live our lives today, with many of the best doctors and all their years of experience retiring...especially after the Covid demands put on them we are in a period of time that there are too many patients for too little professionals and therefore we are having to see professionals with less time in the field and fewer professionals, in general available. So, we have to come to sites like this and help each other and also do our research etc. etc.
Wow, I knew about Hawaii but not Korea....although I have understood BE/MAC is becoming more prevalent world wide. That should get the pharmaceuticals interested in more research! Hope so.
Wishing you those good days we all wish for.
Barbara
@maliko Overall feels much solid, fatigue is gone, wheezing is gone, though occasionally have eye flashness, and slight hearing decline after four months of three antibiotics daily + amikacin inhalation three times a week.
-
Like -
Helpful -
Hug
2 ReactionsI remember distinctly it taking a little over a month before my chest pain when lying down improved. Because it’s a slow growing infection, it’s slow to go away…. I recall thinking at 6 mos I was good:) it gets better!
I’m new to all of this so please bear with me. I was diagnosed in January, 2024 with M. abssessus and bronchiectasis accidentally after abnormal chest CT and subsequent BAL. I was asymptomatic until this summer (July I think). Symptoms began with cough, fatigue, night sweats. Infectious Disease and Pulmonary advised early intervention with 3 antibiotics (not sure if they were the “Big 3”) Azithromycin, omadacycline, and linezolid. Due to contraindicated linezolid and current Wellbutrin, and having serotonin syndrome after 2 days, switched to tedizolid. Tedizolid gave me neuropathy in feet after 1 month so it was d/c’d. 2nd BAL showed MAC and inhaled amikacin was added daily to already daily azithromycin and omadacycline. Have had baseline and 1 follow-up hearing test. All good there. Now being advised to add ethambutol with a follow up BAL in 1 month. My concern is this… just in past few days my vision in my right eye has declined so I am unsure about adding ethambutol. I am scheduled for baseline eye exam this week. Not sure what is the vision decline culprit. (To complicate further, I have also been on Wegovy for weight loss and am taking my goal weight maintenance dose.) I feel like I have a good team of doctors but also feel kind of left in the dark as to prognosis, which side effects are concerning for each med (besides the obvious vision, hearing and neuropathy, not to mention the torturous serotonin syndrome I experienced). There are so many overlapping effects and I feel miserable. I don’t feel like I have gotten enough education on expectations, prognosis, and risk/benefits of this multi drug therapy. I asked my ID doctor if this were his own wife would he be recommending such treatment. Yes was his answer. I just don’t know enough to even know whether to continue to treat and just suck it up for the 12-24 months or what the alternatives even are. If it makes any difference I am a 55 year-old female ex-smoker for over 20 years. If you’ve read this far, thank you. Any and all feedback appreciated.
-
Like -
Helpful -
Hug
1 ReactionI’m so sorry you’re dealing with this. I have not had to make these decisions yet since my MAC cultures were negative. I’ve been on the site for about 18 months. A couple bits of info might be helpful to those responding. Do you have cavities? Are you in the care of a team that sees a lot of MAC patients?
Good luck to you.
-
Like -
Helpful -
Hug
2 ReactionsSome additional information is that I am unsure if they said I have cavities or not. There are for sure nodules. My team does treat a lot of MAC patients and consults with NJH regularly. All courses of treatment so far have been per NJH’s recommendations.