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tomha
@tomha

Posts: 7
Joined: Dec 11, 2017

Is MAI included in the MAC & Bronchiectasis group?

Posted by @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.

REPLY

Hi @tomha and welcome yes many of us have MAI on here including myself. Everyone reacts differently to meds so ust wait and see, if you do go onto them we can help with the side effects. It is not uncommon to wait to see if the MAC is active before starting the drugs, so please dont worry. Hopefully your mack will not be active . Take care.

@heathert

Hi @tomha and welcome yes many of us have MAI on here including myself. Everyone reacts differently to meds so ust wait and see, if you do go onto them we can help with the side effects. It is not uncommon to wait to see if the MAC is active before starting the drugs, so please dont worry. Hopefully your mack will not be active . Take care.

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Thank you, Heather. I’m certain mine is active because I initially lost 35 pounds over just a few months, and I cannot yet gain that weight back. I have a slim build to begin with, so the loss of that much weight is troubling.

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

@heathert

Hi @tomha and welcome yes many of us have MAI on here including myself. Everyone reacts differently to meds so ust wait and see, if you do go onto them we can help with the side effects. It is not uncommon to wait to see if the MAC is active before starting the drugs, so please dont worry. Hopefully your mack will not be active . Take care.

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We know the feeling. My dr put me on drinks with fat and vitamins, called Fortasip to help with the weight, maby you could get something like that also.

@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

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Thank you, Gina. I think I’ll need all the luck I can get 🙂

@heathert

Hi @tomha and welcome yes many of us have MAI on here including myself. Everyone reacts differently to meds so ust wait and see, if you do go onto them we can help with the side effects. It is not uncommon to wait to see if the MAC is active before starting the drugs, so please dont worry. Hopefully your mack will not be active . Take care.

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Tomha, I do not post often but wanted to encourage you to begin taking a good probiotic. I too lost 35 pounds in the first three months. My doctor recommended VSL 3. I get it at SAMs or Costco. Too, I took pancreatic enzymes as any food I ate was not providing nutrients, thus, going in and out of my body quickly. I could not tolerate the Big 3, but am stable and have gained back 20 lbs. Too, I attend pulmonary rehab twice a week. I feel great again. God bless! Jan/GA

@heathert

Hi @tomha and welcome yes many of us have MAI on here including myself. Everyone reacts differently to meds so ust wait and see, if you do go onto them we can help with the side effects. It is not uncommon to wait to see if the MAC is active before starting the drugs, so please dont worry. Hopefully your mack will not be active . Take care.

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Thank you very much for the information, Jan. Take care!

@heathert

Hi @tomha and welcome yes many of us have MAI on here including myself. Everyone reacts differently to meds so ust wait and see, if you do go onto them we can help with the side effects. It is not uncommon to wait to see if the MAC is active before starting the drugs, so please dont worry. Hopefully your mack will not be active . Take care.

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Thank you, Heather. I’ll see if I can get some 🙂

@tomha Hello Tom, and welcome to our forum. As you can already tell, we have a wonderful group of people willing to offer support. I hope you have a very good doctor who has explained what this disease is and how to stay on top of it. My secret to staying healthy is following guidelines set up for people who have already had a lung transplant. They must avoid infections at all costs, and you know what, so do we. A few examples of the extra care transplantees take to avoid the bad germs are: do not eat at buffet lines. Many hands touch those ladles and there are many germs on them like cold & flu. Grocery cart handles, eating in restaurants, shaking hands with people, touching door handles at stores, etc. are ways to pick up infectious illnesses that can cause us severe setbacks. Tom, if you take the time to read back over older posts, especially ones by @katemn, you will find a treasure trove of helpful information.

@windwalker

@tomha Hello Tom, and welcome to our forum. As you can already tell, we have a wonderful group of people willing to offer support. I hope you have a very good doctor who has explained what this disease is and how to stay on top of it. My secret to staying healthy is following guidelines set up for people who have already had a lung transplant. They must avoid infections at all costs, and you know what, so do we. A few examples of the extra care transplantees take to avoid the bad germs are: do not eat at buffet lines. Many hands touch those ladles and there are many germs on them like cold & flu. Grocery cart handles, eating in restaurants, shaking hands with people, touching door handles at stores, etc. are ways to pick up infectious illnesses that can cause us severe setbacks. Tom, if you take the time to read back over older posts, especially ones by @katemn, you will find a treasure trove of helpful information.

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Thank you very much, Terri. I will search for those posts!

@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.

@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

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@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.

@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.

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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.

Liked by Jen_b

@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

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@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

@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

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@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.

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