I would doubt it. In my case, the cavitation has been more problematic than the MAC.
If the MAC/infection has progressed to cause cavities there has been other symptoms like weight loss, comic cough, hemoptysis. I personally beat MAC only to have a fungal infection set in my cavity later.
@dls224 I was diagnosed with Be/MAC in 2017. Last October I went to NJH for first time, and was told I had a cavity and they wanted to start treatment, although said I had time to go home and think about. I was told it was “small” in size. I was also told that they did see another cavity that had closed on its own, but they didn’t know how. After much prayer and thought, I chose not to treat and just have local Dr keep an eye on. I also had moved in the process and had to find new Dr. On my last check up after 9 months went by, still no change in cavity. I am choosing at this point not to treat unless absolutely necessary. I now have ID Dr and Pulmonologist who I am confident in! I also decided as much as I am glad I went to NJH, it is expensive to travel and not convenient to continue. I truly believe I can have treatment locally! I hope this helps.
We are all different with our diagnosis, and must be treated accordingly!
@dls224 I was diagnosed with Be/MAC in 2017. Last October I went to NJH for first time, and was told I had a cavity and they wanted to start treatment, although said I had time to go home and think about. I was told it was “small” in size. I was also told that they did see another cavity that had closed on its own, but they didn’t know how. After much prayer and thought, I chose not to treat and just have local Dr keep an eye on. I also had moved in the process and had to find new Dr. On my last check up after 9 months went by, still no change in cavity. I am choosing at this point not to treat unless absolutely necessary. I now have ID Dr and Pulmonologist who I am confident in! I also decided as much as I am glad I went to NJH, it is expensive to travel and not convenient to continue. I truly believe I can have treatment locally! I hope this helps.
We are all different with our diagnosis, and must be treated accordingly!
Thanks so much for sharing this!! I understand each of our cases are unique; but i do know I may not be able to handle the drugs and want to brace mentally and emotionally for that possibility.
Knowing what you know now about how you feel with your local care; would you make the trip to NJH had you never been ?
Thanks so much for sharing this!! I understand each of our cases are unique; but i do know I may not be able to handle the drugs and want to brace mentally and emotionally for that possibility.
Knowing what you know now about how you feel with your local care; would you make the trip to NJH had you never been ?
Glenda, you'll notice that I removed your personal phone number. Connect is a public forum. We recommend sharing personal contact information using the secure private message function.
I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from your experiences.
@dls224 I was diagnosed with Be/MAC in 2017. Last October I went to NJH for first time, and was told I had a cavity and they wanted to start treatment, although said I had time to go home and think about. I was told it was “small” in size. I was also told that they did see another cavity that had closed on its own, but they didn’t know how. After much prayer and thought, I chose not to treat and just have local Dr keep an eye on. I also had moved in the process and had to find new Dr. On my last check up after 9 months went by, still no change in cavity. I am choosing at this point not to treat unless absolutely necessary. I now have ID Dr and Pulmonologist who I am confident in! I also decided as much as I am glad I went to NJH, it is expensive to travel and not convenient to continue. I truly believe I can have treatment locally! I hope this helps.
We are all different with our diagnosis, and must be treated accordingly!
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
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I would doubt it. In my case, the cavitation has been more problematic than the MAC.
If the MAC/infection has progressed to cause cavities there has been other symptoms like weight loss, comic cough, hemoptysis. I personally beat MAC only to have a fungal infection set in my cavity later.
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2 Reactions@dls224 I was diagnosed with Be/MAC in 2017. Last October I went to NJH for first time, and was told I had a cavity and they wanted to start treatment, although said I had time to go home and think about. I was told it was “small” in size. I was also told that they did see another cavity that had closed on its own, but they didn’t know how. After much prayer and thought, I chose not to treat and just have local Dr keep an eye on. I also had moved in the process and had to find new Dr. On my last check up after 9 months went by, still no change in cavity. I am choosing at this point not to treat unless absolutely necessary. I now have ID Dr and Pulmonologist who I am confident in! I also decided as much as I am glad I went to NJH, it is expensive to travel and not convenient to continue. I truly believe I can have treatment locally! I hope this helps.
We are all different with our diagnosis, and must be treated accordingly!
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5 ReactionsThanks so much for sharing this!! I understand each of our cases are unique; but i do know I may not be able to handle the drugs and want to brace mentally and emotionally for that possibility.
Knowing what you know now about how you feel with your local care; would you make the trip to NJH had you never been ?
@dls224 That’s a tough question! If you send me a private message I will explain more in depth!
If not, I can give you readers digest version!
Glenda, you'll notice that I removed your personal phone number. Connect is a public forum. We recommend sharing personal contact information using the secure private message function.
I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from your experiences.
Glenda - our stories are very similar except I was already under treatment and NJH wanted to remove my RUL I'm seeking another opinion.
@rstel7272
Help me Rick, I don’t know what RUL stands for …right upper lung??
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1 ReactionActually, Right Upper Lobe. Did you have a ventilation-perfusion (VQ) scan test done? I did, my RUL was about 6% of my total lung o2 exchange.
Are MAC and MAI the same thing?
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
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3 Reactions