Yes, they are two ways to refer to Mycobacteria avium. In early days, the main variant they identified in the lab was Intracellulare, so it was referred to as MAI. Now, over 200 strains are known (only a few infect humans) so it is referred to as Mycobacteria Avium Complex (MAC.) Some old-time docs still call it MAI - no matter, the treatment is the same.
And sometimes it is referred to as NTM - Non-tubercular Mycobacteria because TB is also a mycobacteria as is leprosy.
Terminology can be a tricky world
Sue
Hello,
I am not sure if this is helpful, but it's one person's experience with the cavitties. I have cavitary MAC, but my only symptom is shortness of breath on staircase and other activities like that. Since 2015 when I had one cavity (and was first diagnosed), I received the three typical antibiotics which helped a little, lessening some of the nodules. In 2018, I was no longer receiving the anti-biotics because Arikayce was recommended, which I did not do because I thought it caused deafness, and I couldn't find out that much about the deafness (as a progression or if it went away, or if there was also tinnitus, etc.)
My lungs are worsening based on the CT scan, and I show positive for the sputum. There are more nodules in some new places, and I now have 3 cavities. I know much less than many of you since my doctor never said much about the illness, and I didn't realize how variable it is, so I didn't do my own due diligence to learn more.
I am now leaning toward the amikacin nebulized (with the antibiotics that go with) as a treatment option, but am confused why I don't have more symptoms, and fear losing my hearing. I am 64. Because I also have Gerd and brochiectasis, I am concerned that inhaling through the nebulizer will really bother my breathing. I have some time to decide, according to the doctor who gave me a second opinion. Any insight welcome, and I hope I have helped those of you on a similar path. My second doctor said this illness can continue to develop slowly, or worsen more significantly, or even improve. She insists they don't know enough to determine that.
Hello,
I am not sure if this is helpful, but it's one person's experience with the cavitties. I have cavitary MAC, but my only symptom is shortness of breath on staircase and other activities like that. Since 2015 when I had one cavity (and was first diagnosed), I received the three typical antibiotics which helped a little, lessening some of the nodules. In 2018, I was no longer receiving the anti-biotics because Arikayce was recommended, which I did not do because I thought it caused deafness, and I couldn't find out that much about the deafness (as a progression or if it went away, or if there was also tinnitus, etc.)
My lungs are worsening based on the CT scan, and I show positive for the sputum. There are more nodules in some new places, and I now have 3 cavities. I know much less than many of you since my doctor never said much about the illness, and I didn't realize how variable it is, so I didn't do my own due diligence to learn more.
I am now leaning toward the amikacin nebulized (with the antibiotics that go with) as a treatment option, but am confused why I don't have more symptoms, and fear losing my hearing. I am 64. Because I also have Gerd and brochiectasis, I am concerned that inhaling through the nebulizer will really bother my breathing. I have some time to decide, according to the doctor who gave me a second opinion. Any insight welcome, and I hope I have helped those of you on a similar path. My second doctor said this illness can continue to develop slowly, or worsen more significantly, or even improve. She insists they don't know enough to determine that.
I have nothing to offer in the way of advice for your situation other than these guidelines from Dr. Huitt regarding how best to manage GERD.
I’m glad you’re seeking second opinions and now being diligent and considering all options for yourself.
I agree with what your present second opinion Dr said as far as no one seems to have all the answers with this. It seems the best we can do is educate ourselves with what’s out there and seek as much advice and opinion from the experienced dealing with it and the best Drs and health facilities accessible.
I wish you good health and success with whatever options you choose moving forward.
Hello,
I am not sure if this is helpful, but it's one person's experience with the cavitties. I have cavitary MAC, but my only symptom is shortness of breath on staircase and other activities like that. Since 2015 when I had one cavity (and was first diagnosed), I received the three typical antibiotics which helped a little, lessening some of the nodules. In 2018, I was no longer receiving the anti-biotics because Arikayce was recommended, which I did not do because I thought it caused deafness, and I couldn't find out that much about the deafness (as a progression or if it went away, or if there was also tinnitus, etc.)
My lungs are worsening based on the CT scan, and I show positive for the sputum. There are more nodules in some new places, and I now have 3 cavities. I know much less than many of you since my doctor never said much about the illness, and I didn't realize how variable it is, so I didn't do my own due diligence to learn more.
I am now leaning toward the amikacin nebulized (with the antibiotics that go with) as a treatment option, but am confused why I don't have more symptoms, and fear losing my hearing. I am 64. Because I also have Gerd and brochiectasis, I am concerned that inhaling through the nebulizer will really bother my breathing. I have some time to decide, according to the doctor who gave me a second opinion. Any insight welcome, and I hope I have helped those of you on a similar path. My second doctor said this illness can continue to develop slowly, or worsen more significantly, or even improve. She insists they don't know enough to determine that.
Hearing loss is much less common with inhaled amikacin compared to iv
I added Arikayce to standard treatment 2 years ago at 66
I had never had any MAC symptoms- like you, damage on CT and positive smears and cultures
I had a lot of coughing the first 1-2 months on Arikayce and my GERD was worse related to that , but then the side effects settled and my cultures converted to negative within 5 weeks and stayed that way ( fingers crossed)
In other words, Arikayce can be very effective and mostly tolerable after the first couple of months, so not something to be scared of
Good luck if you go ahead with it
Hearing loss is much less common with inhaled amikacin compared to iv
I added Arikayce to standard treatment 2 years ago at 66
I had never had any MAC symptoms- like you, damage on CT and positive smears and cultures
I had a lot of coughing the first 1-2 months on Arikayce and my GERD was worse related to that , but then the side effects settled and my cultures converted to negative within 5 weeks and stayed that way ( fingers crossed)
In other words, Arikayce can be very effective and mostly tolerable after the first couple of months, so not something to be scared of
Good luck if you go ahead with it
This is incredibly helpful. I am more and more confident I should go ahead with Arikayce. I hope you saw the tip from another person on this site that sodium chloride can help with the coughing. They add some to the nebulizer. At least that worked for that person. My sister who is a nurse was familiar with the pharmacist at her hospital doing that for other nebulized meds.
Hello,
I am not sure if this is helpful, but it's one person's experience with the cavitties. I have cavitary MAC, but my only symptom is shortness of breath on staircase and other activities like that. Since 2015 when I had one cavity (and was first diagnosed), I received the three typical antibiotics which helped a little, lessening some of the nodules. In 2018, I was no longer receiving the anti-biotics because Arikayce was recommended, which I did not do because I thought it caused deafness, and I couldn't find out that much about the deafness (as a progression or if it went away, or if there was also tinnitus, etc.)
My lungs are worsening based on the CT scan, and I show positive for the sputum. There are more nodules in some new places, and I now have 3 cavities. I know much less than many of you since my doctor never said much about the illness, and I didn't realize how variable it is, so I didn't do my own due diligence to learn more.
I am now leaning toward the amikacin nebulized (with the antibiotics that go with) as a treatment option, but am confused why I don't have more symptoms, and fear losing my hearing. I am 64. Because I also have Gerd and brochiectasis, I am concerned that inhaling through the nebulizer will really bother my breathing. I have some time to decide, according to the doctor who gave me a second opinion. Any insight welcome, and I hope I have helped those of you on a similar path. My second doctor said this illness can continue to develop slowly, or worsen more significantly, or even improve. She insists they don't know enough to determine that.
Here is what I will tell you - Do it!! Cured me!! I have other stuff now, but the inhaled version did the trick!! I had no side effects! Wishing you well! Irene5
Here is what I will tell you - Do it!! Cured me!! I have other stuff now, but the inhaled version did the trick!! I had no side effects! Wishing you well! Irene5
Thanks for the vote of confidence! Did you experience the coughing during the treatments and after, or just during them? I understand coughing is part of the process of nebulizing, but I can't tell if a person on Arikayce is coughing all day, or more intermittently.
Thanks for the vote of confidence! Did you experience the coughing during the treatments and after, or just during them? I understand coughing is part of the process of nebulizing, but I can't tell if a person on Arikayce is coughing all day, or more intermittently.
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Thank you, Sue!
Your replies are always so helpful.
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1 ReactionHello,
I am not sure if this is helpful, but it's one person's experience with the cavitties. I have cavitary MAC, but my only symptom is shortness of breath on staircase and other activities like that. Since 2015 when I had one cavity (and was first diagnosed), I received the three typical antibiotics which helped a little, lessening some of the nodules. In 2018, I was no longer receiving the anti-biotics because Arikayce was recommended, which I did not do because I thought it caused deafness, and I couldn't find out that much about the deafness (as a progression or if it went away, or if there was also tinnitus, etc.)
My lungs are worsening based on the CT scan, and I show positive for the sputum. There are more nodules in some new places, and I now have 3 cavities. I know much less than many of you since my doctor never said much about the illness, and I didn't realize how variable it is, so I didn't do my own due diligence to learn more.
I am now leaning toward the amikacin nebulized (with the antibiotics that go with) as a treatment option, but am confused why I don't have more symptoms, and fear losing my hearing. I am 64. Because I also have Gerd and brochiectasis, I am concerned that inhaling through the nebulizer will really bother my breathing. I have some time to decide, according to the doctor who gave me a second opinion. Any insight welcome, and I hope I have helped those of you on a similar path. My second doctor said this illness can continue to develop slowly, or worsen more significantly, or even improve. She insists they don't know enough to determine that.
-
Like -
Helpful -
Hug
4 ReactionsI have nothing to offer in the way of advice for your situation other than these guidelines from Dr. Huitt regarding how best to manage GERD.
I’m glad you’re seeking second opinions and now being diligent and considering all options for yourself.
I agree with what your present second opinion Dr said as far as no one seems to have all the answers with this. It seems the best we can do is educate ourselves with what’s out there and seek as much advice and opinion from the experienced dealing with it and the best Drs and health facilities accessible.
I wish you good health and success with whatever options you choose moving forward.
Thank you for your kind words. I find others' feedback is answering some of the riddles.
Best regards to you.
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Hug
2 ReactionsHearing loss is much less common with inhaled amikacin compared to iv
I added Arikayce to standard treatment 2 years ago at 66
I had never had any MAC symptoms- like you, damage on CT and positive smears and cultures
I had a lot of coughing the first 1-2 months on Arikayce and my GERD was worse related to that , but then the side effects settled and my cultures converted to negative within 5 weeks and stayed that way ( fingers crossed)
In other words, Arikayce can be very effective and mostly tolerable after the first couple of months, so not something to be scared of
Good luck if you go ahead with it
-
Like -
Helpful -
Hug
1 ReactionThis is incredibly helpful. I am more and more confident I should go ahead with Arikayce. I hope you saw the tip from another person on this site that sodium chloride can help with the coughing. They add some to the nebulizer. At least that worked for that person. My sister who is a nurse was familiar with the pharmacist at her hospital doing that for other nebulized meds.
Thank you!!!
Mokie
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3 ReactionsHere is what I will tell you - Do it!! Cured me!! I have other stuff now, but the inhaled version did the trick!! I had no side effects! Wishing you well! Irene5
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Hug
1 ReactionHi, Irene
Thanks for the vote of confidence! Did you experience the coughing during the treatments and after, or just during them? I understand coughing is part of the process of nebulizing, but I can't tell if a person on Arikayce is coughing all day, or more intermittently.
Grateful for any insight,
Mokie
I coughed when using it - basically during- but that wasn’t too long lived.
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1 ReactionI sometimes coughed during nebulization but the increased cough in the first few weeks was from a big increase in sputum, which settled after a while