(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

@katemn

Hello Posted by @laneyk, 1 day ago
Hello everyone. I have a praise report. I am 6 months off the meds and got sputum results today. No bacteria found. I am feeling so much better than I was 2 years ago. There is light at the end of the tunnel and life after MAC. I wish everyone could have the results I have had with this disease. I have not had the nerve to ask about reoccurrence, but I think I will in March when I see the doctor again.

Hello Elaine, I am answering you on the Main MAC & BRONCHIECTASIS page .. because EVERYONE needs to see your wonderful news!! I am so happy for you .. now just live your life .. don’t worry about what MIGHT happen .. just delight in what IS!! Be in the here and now .. be joyful! We will be joyful with you! Sending you a hug! Katherine

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Hi @tessie, I think that part ‘listening to our bodies’ is SO important! We have been living in those bodies a LOT longer than any doctor has been treating us .. but as you said ‘then right back following doctor’s instructions’! Can’t think of a better combo! It is smart of you to think through cause and effect .. raw food .. stomach cramps. That is exactly how I figured out my migraine triggers .. watching cause and effect.

In terms of the diarrhea .. have you seen any cause and effect there? For me personally I found ‘regularity’ by taking daily FIBERCON .. I took a cheaper generic form and that really helped me a lot .. twice a day worked for me. I am assuming you are taking a 30 to 50 billion probiotic daily for stomach health? Tessie, with your great attitude you will indeed “kick those critters in the butt”!! Hugs to you! Katherine (love that visual!)

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@katemn

Hello Posted by @laneyk, 1 day ago
Hello everyone. I have a praise report. I am 6 months off the meds and got sputum results today. No bacteria found. I am feeling so much better than I was 2 years ago. There is light at the end of the tunnel and life after MAC. I wish everyone could have the results I have had with this disease. I have not had the nerve to ask about reoccurrence, but I think I will in March when I see the doctor again.

Hello Elaine, I am answering you on the Main MAC & BRONCHIECTASIS page .. because EVERYONE needs to see your wonderful news!! I am so happy for you .. now just live your life .. don’t worry about what MIGHT happen .. just delight in what IS!! Be in the here and now .. be joyful! We will be joyful with you! Sending you a hug! Katherine

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Wow…what a milestone! Phew! Very happy for you in case you can’t tell…!

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@maryjo2sell

Hi all. Mary Jo here. Now going to Mayo Florida next week. Had an appointment today but my grand daughter thoughtfully gave me strep throat so had to cancel for a week! It has been so quiet on the site I thought all had been cured! Just want to add that we can put all sorts of stuff in our home for filtration, but still have to exist outside of our bubble. Fountains, misters, sprinklers, anything with water outside contains these mycobacterium. You can avoid some contact- don’t sit under “cooling misters”, give lots of “leeway” to fountains, go the other direction if sprinklers are running, but the main thing we can do is try to exercise, eat right, gets lots of rest, avoid stress (Haha) and try to build up our immune systems. Right now mine is definitely down as I have had shingles and then strep. Hope Dr. Leventhal has some magic to work on me next week 🙂 Happy, healthy thoughts to all. Stay positive even though sometimes that is very hard.

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@maryjo2sell, Hi Mary Jo, good to hear from you! What great information and thinking for our Forum pages .. indeed we can be so careful inside our home .. BUT we do indeed exist outside our homes and ‘armed is forearmed’! Just being reminded of the things you mentioned helps us! Good luck next week .. be sure to let us know how it goes.

BUT what lousy news about the shingles and then strep!! Question: did you get the Zosters (shingles) shot? I had mine in 2007 .. BUT in doing a bit of research I found the below that I thought was interesting .. since my shot was in 2007 I now have zero immunity! Personally I am going to wait for the new Shingrix shot .. hopefully the FDA will approve it soon! Shingles is a bad dude!
https://well.blogs.nytimes.com/2015/11/12/ask-well-a-booster-vaccine-for-shingles/?_r=0http://www.fiercepharma.com/vaccines/first-shingrix-application-gsk-advances-toward-merck-market-duel
Again, keep us posted on your appointment .. hope it goes well! Hugs to you! Katherine

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@maryjo2sell

Hi all. Mary Jo here. Now going to Mayo Florida next week. Had an appointment today but my grand daughter thoughtfully gave me strep throat so had to cancel for a week! It has been so quiet on the site I thought all had been cured! Just want to add that we can put all sorts of stuff in our home for filtration, but still have to exist outside of our bubble. Fountains, misters, sprinklers, anything with water outside contains these mycobacterium. You can avoid some contact- don’t sit under “cooling misters”, give lots of “leeway” to fountains, go the other direction if sprinklers are running, but the main thing we can do is try to exercise, eat right, gets lots of rest, avoid stress (Haha) and try to build up our immune systems. Right now mine is definitely down as I have had shingles and then strep. Hope Dr. Leventhal has some magic to work on me next week 🙂 Happy, healthy thoughts to all. Stay positive even though sometimes that is very hard.

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@maryjo2sell, Mary Jo, 79 pages IS a lot .. but that is a GREAT history .. history that will not have to be repeated .. verbally by you .. tests not repeated .. tests that can be compared to. Actually a really good foundation for you. Good for you that you did your due diligence and got all those records transferred so your new doctor will have a clearer picture of just where you have been .. and where you need to go now. Good luck! Hugs! Katherine

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Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago
I talked to my pulmonologist on Tues. and i brought up probiotics to her. She said these three antibiotics do not attack the good bacteria in the gut, that they only work for nothing but mac. Did your doctor recommend them? Im so confused. She said they would do nothing. I have been so sick today. An hour after i took my meds last night i vomited it all up and have been sick since. The first day i took all the meds at 9:00 pm. and went to bed. I did fine. I ate at 6:00 pm. Ive never had anything make me so ill. Im so nauseated i cant eat, but i know i cant continue not eating. Also my dr. gave me Ondansetron 4mg. for nausea. Doesnt help a bit.
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@21042 .. Kathi I think you can already tell I am a pretty straight shooter .. I tell it like it is .. so here goes. Your doctor is NUTS .. AND poorly informed!! You can tell her that Dr. Timothy Aksamit at Mayo Clinic, Rochester MN .. a worldwide respected EXPERT on MAC told ME to start on probiotics the FIRST time he started me on antibiotics! Plus if you read through the pages of our Forum you will read how much probiotics are helping our other members. Kathi, do what feels right for you and your body .. BUT I just wonder how many MAC patients your Pulmonologists has treated in the past 12 months?? Sorry, but she just doesn’t seem up to speed enough to help you to your best self.

Please re read the above message from Posted by @pamelasc1, 3 days ago .. might that help you? I feel so bad for you .. BUT do NOT give up .. it is so tough in the beginning but it DOES get better .. just put one foot in front in front of the other. We will all be here for you. I am answering you an the Main MAC Forum .. I want you to get more support from more of our wonderful members! I am sending you a BIG Hug! Katherine

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@katemn

Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago
I talked to my pulmonologist on Tues. and i brought up probiotics to her. She said these three antibiotics do not attack the good bacteria in the gut, that they only work for nothing but mac. Did your doctor recommend them? Im so confused. She said they would do nothing. I have been so sick today. An hour after i took my meds last night i vomited it all up and have been sick since. The first day i took all the meds at 9:00 pm. and went to bed. I did fine. I ate at 6:00 pm. Ive never had anything make me so ill. Im so nauseated i cant eat, but i know i cant continue not eating. Also my dr. gave me Ondansetron 4mg. for nausea. Doesnt help a bit.
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@21042 .. Kathi I think you can already tell I am a pretty straight shooter .. I tell it like it is .. so here goes. Your doctor is NUTS .. AND poorly informed!! You can tell her that Dr. Timothy Aksamit at Mayo Clinic, Rochester MN .. a worldwide respected EXPERT on MAC told ME to start on probiotics the FIRST time he started me on antibiotics! Plus if you read through the pages of our Forum you will read how much probiotics are helping our other members. Kathi, do what feels right for you and your body .. BUT I just wonder how many MAC patients your Pulmonologists has treated in the past 12 months?? Sorry, but she just doesn’t seem up to speed enough to help you to your best self.

Please re read the above message from Posted by @pamelasc1, 3 days ago .. might that help you? I feel so bad for you .. BUT do NOT give up .. it is so tough in the beginning but it DOES get better .. just put one foot in front in front of the other. We will all be here for you. I am answering you an the Main MAC Forum .. I want you to get more support from more of our wonderful members! I am sending you a BIG Hug! Katherine

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I agree! That doctor is “misguided.” Everyone knows probiotics are good and helpful when you are on antibiotics. Irene

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Yes, probiotics really help with the healing process and to prevent breakdown of the immune system in general.

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@21042 .. Kathi this is why I moved your post to our main MAC & BRONCHIETASIS Forum .. see how quickly our wonderful members jumped in to support you on our shared journey? Kathi, you keep coming back .. we all know how tough this first part is .. we will be here for you. Sending you a hug! Katherine

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@katemn

Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago
I talked to my pulmonologist on Tues. and i brought up probiotics to her. She said these three antibiotics do not attack the good bacteria in the gut, that they only work for nothing but mac. Did your doctor recommend them? Im so confused. She said they would do nothing. I have been so sick today. An hour after i took my meds last night i vomited it all up and have been sick since. The first day i took all the meds at 9:00 pm. and went to bed. I did fine. I ate at 6:00 pm. Ive never had anything make me so ill. Im so nauseated i cant eat, but i know i cant continue not eating. Also my dr. gave me Ondansetron 4mg. for nausea. Doesnt help a bit.
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@21042 .. Kathi I think you can already tell I am a pretty straight shooter .. I tell it like it is .. so here goes. Your doctor is NUTS .. AND poorly informed!! You can tell her that Dr. Timothy Aksamit at Mayo Clinic, Rochester MN .. a worldwide respected EXPERT on MAC told ME to start on probiotics the FIRST time he started me on antibiotics! Plus if you read through the pages of our Forum you will read how much probiotics are helping our other members. Kathi, do what feels right for you and your body .. BUT I just wonder how many MAC patients your Pulmonologists has treated in the past 12 months?? Sorry, but she just doesn’t seem up to speed enough to help you to your best self.

Please re read the above message from Posted by @pamelasc1, 3 days ago .. might that help you? I feel so bad for you .. BUT do NOT give up .. it is so tough in the beginning but it DOES get better .. just put one foot in front in front of the other. We will all be here for you. I am answering you an the Main MAC Forum .. I want you to get more support from more of our wonderful members! I am sending you a BIG Hug! Katherine

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21042 – my dr didn’t recommend probiotics, but I knew and also read on here that antibotics flush your system, of good bacteria too. I asked the pharmacist when I picked up my meds which one they recommended. Florastor was recommended to me, which I order online through costco, is the best price I’ve found. And I’ve found taking one in morning and one at night works best for me. Also with your 3 meds. My Dr recommended spreading them out. I took the rifampin and azrith together and felt nausea. So I take 1 at each meal now. Rifampin after breakfast , azrith (can’t spell this one) after lunch and ethambutol after dinner. I have alot of other meds I take too at breakfast and dinner and bed for other things. Just have to keep switching them around to see what works for you. You can also call your pharmacist and ask for suggestions too. Whenever I start a new drug now I ask the pharmacist to pull up my rxs and see if any interfer with each other or ask for suggestions on when to take it. Good luck!

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@katemn

Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago
I talked to my pulmonologist on Tues. and i brought up probiotics to her. She said these three antibiotics do not attack the good bacteria in the gut, that they only work for nothing but mac. Did your doctor recommend them? Im so confused. She said they would do nothing. I have been so sick today. An hour after i took my meds last night i vomited it all up and have been sick since. The first day i took all the meds at 9:00 pm. and went to bed. I did fine. I ate at 6:00 pm. Ive never had anything make me so ill. Im so nauseated i cant eat, but i know i cant continue not eating. Also my dr. gave me Ondansetron 4mg. for nausea. Doesnt help a bit.
++++++++++++++++++++++++++++++++++++++++++++++++++++++
@21042 .. Kathi I think you can already tell I am a pretty straight shooter .. I tell it like it is .. so here goes. Your doctor is NUTS .. AND poorly informed!! You can tell her that Dr. Timothy Aksamit at Mayo Clinic, Rochester MN .. a worldwide respected EXPERT on MAC told ME to start on probiotics the FIRST time he started me on antibiotics! Plus if you read through the pages of our Forum you will read how much probiotics are helping our other members. Kathi, do what feels right for you and your body .. BUT I just wonder how many MAC patients your Pulmonologists has treated in the past 12 months?? Sorry, but she just doesn’t seem up to speed enough to help you to your best self.

Please re read the above message from Posted by @pamelasc1, 3 days ago .. might that help you? I feel so bad for you .. BUT do NOT give up .. it is so tough in the beginning but it DOES get better .. just put one foot in front in front of the other. We will all be here for you. I am answering you an the Main MAC Forum .. I want you to get more support from more of our wonderful members! I am sending you a BIG Hug! Katherine

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Dr Gwen Huitt ID MD specializing in NTM at National Jewish Health urges clients on the antibiotics to take probiotics…She earned a masters in Microbiology prior to attending Med school. And has worked with hundreds of NTM clients.terriD

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@katemn

Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago
I talked to my pulmonologist on Tues. and i brought up probiotics to her. She said these three antibiotics do not attack the good bacteria in the gut, that they only work for nothing but mac. Did your doctor recommend them? Im so confused. She said they would do nothing. I have been so sick today. An hour after i took my meds last night i vomited it all up and have been sick since. The first day i took all the meds at 9:00 pm. and went to bed. I did fine. I ate at 6:00 pm. Ive never had anything make me so ill. Im so nauseated i cant eat, but i know i cant continue not eating. Also my dr. gave me Ondansetron 4mg. for nausea. Doesnt help a bit.
++++++++++++++++++++++++++++++++++++++++++++++++++++++
@21042 .. Kathi I think you can already tell I am a pretty straight shooter .. I tell it like it is .. so here goes. Your doctor is NUTS .. AND poorly informed!! You can tell her that Dr. Timothy Aksamit at Mayo Clinic, Rochester MN .. a worldwide respected EXPERT on MAC told ME to start on probiotics the FIRST time he started me on antibiotics! Plus if you read through the pages of our Forum you will read how much probiotics are helping our other members. Kathi, do what feels right for you and your body .. BUT I just wonder how many MAC patients your Pulmonologists has treated in the past 12 months?? Sorry, but she just doesn’t seem up to speed enough to help you to your best self.

Please re read the above message from Posted by @pamelasc1, 3 days ago .. might that help you? I feel so bad for you .. BUT do NOT give up .. it is so tough in the beginning but it DOES get better .. just put one foot in front in front of the other. We will all be here for you. I am answering you an the Main MAC Forum .. I want you to get more support from more of our wonderful members! I am sending you a BIG Hug! Katherine

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Great answer Terri .. Thank you! I am going to add her advice to my File Cabinet! Hugs! Katherine

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@katemn

Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago
I talked to my pulmonologist on Tues. and i brought up probiotics to her. She said these three antibiotics do not attack the good bacteria in the gut, that they only work for nothing but mac. Did your doctor recommend them? Im so confused. She said they would do nothing. I have been so sick today. An hour after i took my meds last night i vomited it all up and have been sick since. The first day i took all the meds at 9:00 pm. and went to bed. I did fine. I ate at 6:00 pm. Ive never had anything make me so ill. Im so nauseated i cant eat, but i know i cant continue not eating. Also my dr. gave me Ondansetron 4mg. for nausea. Doesnt help a bit.
++++++++++++++++++++++++++++++++++++++++++++++++++++++
@21042 .. Kathi I think you can already tell I am a pretty straight shooter .. I tell it like it is .. so here goes. Your doctor is NUTS .. AND poorly informed!! You can tell her that Dr. Timothy Aksamit at Mayo Clinic, Rochester MN .. a worldwide respected EXPERT on MAC told ME to start on probiotics the FIRST time he started me on antibiotics! Plus if you read through the pages of our Forum you will read how much probiotics are helping our other members. Kathi, do what feels right for you and your body .. BUT I just wonder how many MAC patients your Pulmonologists has treated in the past 12 months?? Sorry, but she just doesn’t seem up to speed enough to help you to your best self.

Please re read the above message from Posted by @pamelasc1, 3 days ago .. might that help you? I feel so bad for you .. BUT do NOT give up .. it is so tough in the beginning but it DOES get better .. just put one foot in front in front of the other. We will all be here for you. I am answering you an the Main MAC Forum .. I want you to get more support from more of our wonderful members! I am sending you a BIG Hug! Katherine

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@jillnc, Jill, that is really good information. Each of our bodies is so different .. we are going to react differently to the meds .. so it helps Kathi to see that many of us have had to find our OWN pathway to success .. BUT we kept at it .. and achieved VICTORY! If we did it .. she can also!

@21042, Kathi, since you are new to our Forum .. know that if you want to get back to a particular post to refer to it again .. say back to Pamela’s where she told you how she did her antibiotic schedule .. or above to @jillnc, Jill to remember how she did her’s .. all you have to do is:

1. click on the @ portion of a member’s name and it will take you to their “Activity” .. which lists all their posts
2. then if you want to get even fancier! up at the upper right there is a tiny magnifying glass. Click on it. A SEARCH field will come up. In the Search Field you can put as an example: PROBIOTICS .. and posts with that word in will come up! How ’bout that! Pretty neat trick huh!

Hugs to all! Katherine

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