1. < MAC & Bronchiectasis

Is MAI included in the MAC & Bronchiectasis group?

Posted by tomha @tomha, Dec 13, 2017

My name is Tom, I am 68 years old and have been diagnosed with MAI. I had a CT scan in May (annual lung cancer screening because I was a 50+ year smoker) which showed a suspicious nodule in the upper right lobe. A PET scan was done in June and it indicated cancer, however, apparently MAC and MAI can mimic cancer in a PET scan. I was supposed to have a lobectomy in July, but the surgeon decided that he could get the spot out with just a wedge resection. I have a nice 9" scar across my back and right side now. The pathology report reached us in early September, indicating mycobacterium avium intracellulare complex, or MAI. A followup CT scan in October showed what my doctor called "a tiny spot" that was in the same lobe, only lower. If I would have gotten the lobectomy that was planned, I may not be here now. Swell, huh? Anyway, I just had another followup CT scan yesterday because the doctor wanted to see if that tiny spot changed at all, or if more spots developed. I was disappointed to not start an antibiotic regimen immediately, but I went along with the doctor's plan. So. Awaiting results of the last CT to see where to go from here.

I have read some of the information on side effects of antibiotics here on these forums, and I am a bit concerned, but I believe that attitude is everything and I'll be just fine in the end. Besides, I am taking 85 billion live cultures of 32 probiotic strains every day. I think that will help.

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

Jen_b | @jenblalock | Dec 16, 2017

@tomha I was diagnosed with MAI and cavitary lesions last year and went through the antibiotic regimen which eradicated the MAI and I am now off meds. The cavitary lesions are still there but we just watch them with CT scans. If they cause no trouble they can stay as far as I'm concerned. I'm not interested in surgery at this juncture since I feel well. So, anyway, I am glad that you caught that before you had the lobectomy and am here to tell you that although the antibiotics did affect me, they were not debilitating. I was on azithromycin, clofazimine, ethambutol, rifabutin and amikacin inhaled and IV (not at the same time). Are you still working? I took early retirement (I'm 63) when diagnosed since I really was not feeling well.

REPLY
2 replies
Jen_b | @jenblalock | Dec 16, 2017
In reply to @ginak "Hi @tomha I was also diagnosed with MAI from a lung resection last December. I’m 57...." + (show)
@ginak

Hi @tomha I was also diagnosed with MAI from a lung resection last December. I’m 57. I haven’t gone on any antibiotics yet as I have no symptoms. I also have lung nodules and bronchiectasis and use an Aerobika to loosen the mucus, but, even with that, sometimes I don’t cough up much. My Dr at NYU believes the nodules are caused by aspiration, even slight or silent aspiration, and wants me to have a video fluoroscopy to check on my swallowing. He would rather first treat the cause of the inflammation in my lungs rather than treat the result (MAI). I’m waiting to schedule that appointment. Everyone on here is very knowledgeable and helpful regarding the antibiotics. Good luck on your journey.
Gina K

Jump to this post

@ginak Please let me know what your results are and what the doctor decides to do? This area really interested me since my National Jewish doctor thought the cause of mine was also silent GERD but since that appears to be the go to diagnosis at National Jewish, I was a bit skeptical and my local pulmonologist, who is also an NTM specialist, was also skeptical. To confirm the diagnosis I went to a GI specialist at our Medical University and did the 24 hour PH test plus some kind of motility test where they put the tube down you throat. It wasn't pleasant but worth it. My GI specialist said that it showed I have very mild GERD and no motility issues and she doubts that I am aspirating. She did recommend to stop eating and drinking 3 hours before bed and I do sleep on a wedge as prevention. Best to you.

REPLY
tomha | @tomha | Dec 16, 2017
In reply to @jenblalock "@tomha I was diagnosed with MAI and cavitary lesions last year and went through the antibiotic..." + (show)
@jenblalock

@tomha I was diagnosed with MAI and cavitary lesions last year and went through the antibiotic regimen which eradicated the MAI and I am now off meds. The cavitary lesions are still there but we just watch them with CT scans. If they cause no trouble they can stay as far as I'm concerned. I'm not interested in surgery at this juncture since I feel well. So, anyway, I am glad that you caught that before you had the lobectomy and am here to tell you that although the antibiotics did affect me, they were not debilitating. I was on azithromycin, clofazimine, ethambutol, rifabutin and amikacin inhaled and IV (not at the same time). Are you still working? I took early retirement (I'm 63) when diagnosed since I really was not feeling well.

Jump to this post

Thanks for the information, Jen. I really appreciate it! No, I am not working. I retired early, too, but just because I could. It had nothing to do with my health. I also have the cavitary lesions - I just found out yesterday.

REPLY
ginak | @ginak | Dec 16, 2017
In reply to @ginak "Hi @tomha I was also diagnosed with MAI from a lung resection last December. I’m 57...." + (show)
@ginak

Hi @tomha I was also diagnosed with MAI from a lung resection last December. I’m 57. I haven’t gone on any antibiotics yet as I have no symptoms. I also have lung nodules and bronchiectasis and use an Aerobika to loosen the mucus, but, even with that, sometimes I don’t cough up much. My Dr at NYU believes the nodules are caused by aspiration, even slight or silent aspiration, and wants me to have a video fluoroscopy to check on my swallowing. He would rather first treat the cause of the inflammation in my lungs rather than treat the result (MAI). I’m waiting to schedule that appointment. Everyone on here is very knowledgeable and helpful regarding the antibiotics. Good luck on your journey.
Gina K

Jump to this post

@jenblalock I will let you know. My pulmonologist wants me to have the video fluoroscopy but said nothing about any other type of test. Right now, I’m having trouble getting the referral for my insurance. Pulmonary says primary has to order it and primary says pulmonary has to order it since he’s the one requesting it. So I’m still waiting. Tuesday I go to the Gastro so maybe he can order it and I can finally get it done. I also now sleep on a wedge, and try to avoid eating or drinking 3 hours before bed. I guess no one REALLY knows the cause and they’re all trying to find some commonalities between all of us.
Gina

REPLY
Jen_b | @jenblalock | Dec 16, 2017
In reply to @ginak "Hi @tomha I was also diagnosed with MAI from a lung resection last December. I’m 57...." + (show)
@ginak

Hi @tomha I was also diagnosed with MAI from a lung resection last December. I’m 57. I haven’t gone on any antibiotics yet as I have no symptoms. I also have lung nodules and bronchiectasis and use an Aerobika to loosen the mucus, but, even with that, sometimes I don’t cough up much. My Dr at NYU believes the nodules are caused by aspiration, even slight or silent aspiration, and wants me to have a video fluoroscopy to check on my swallowing. He would rather first treat the cause of the inflammation in my lungs rather than treat the result (MAI). I’m waiting to schedule that appointment. Everyone on here is very knowledgeable and helpful regarding the antibiotics. Good luck on your journey.
Gina K

Jump to this post

@ginak Agreed regarding commonality and to check for GERD is prudent which it sounds like your doctor is doing. I get skeptical when a doctor says they are 100% certain that is the cause without the proper testing to back up that diagnosis.

REPLY
Jen_b | @jenblalock | Dec 16, 2017
In reply to @jenblalock "@tomha I was diagnosed with MAI and cavitary lesions last year and went through the antibiotic..." + (show)
@jenblalock

@tomha I was diagnosed with MAI and cavitary lesions last year and went through the antibiotic regimen which eradicated the MAI and I am now off meds. The cavitary lesions are still there but we just watch them with CT scans. If they cause no trouble they can stay as far as I'm concerned. I'm not interested in surgery at this juncture since I feel well. So, anyway, I am glad that you caught that before you had the lobectomy and am here to tell you that although the antibiotics did affect me, they were not debilitating. I was on azithromycin, clofazimine, ethambutol, rifabutin and amikacin inhaled and IV (not at the same time). Are you still working? I took early retirement (I'm 63) when diagnosed since I really was not feeling well.

Jump to this post

So you may be traveling that same path I did a year ago. Let me know if you have any questions. There is a light at the end of the tunnel.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 2, 2018

@tomha Hi Tom! How are things going for you? -Terri

REPLY
View MoreView Less
Please sign in or register to post a reply.