(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

@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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It was a pulmonologist at Mercy Springfield MO

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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I am a registered dietitian and certified diabetes educator-work full time in a Peds endocrinology clinic

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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What were the daily meds that you had to go onto?

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@josephene

Hi…I am just butting in here – but have been on the big 3, plus IV Amakacin for 11 weeks until it started to affect my hearing. Bidgee

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What did you do after that?

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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Rifampin,Zithromax, and ethambutol

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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That is what I am currently taking, on month 6.

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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Any problems with them?

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@tdrell

Suzie2017 20 years ago I had pain in left groin, thought it was an inguinal hernia….but eventually found out the pain was due to osteoarthritis in the left hip.tdrell

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@clpc and @suzie2017. I and a few others on this site also have some arthritis. From articles I have read about mac; many people with this disease also tend to have arthritis. More commonly, rheumatoid arthritis. I think it has to do with poor immune system.

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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@egayle187 Hello. I just read your post and see that you plan to return to gardening. I love do that also. I hope that you know to wear a mask when working with potting soil. It has over a million mac microbes per teaspoon. I am so afraid of re-infection, so I now have my husband do the digging and re-potting for me. I still enjoy gardening by picking out the plants at the nursery and picking out the spots where they will go in the yard. Also, remember to wear gloves or wash ypur hands good after trimming/handling leafy things. Leaves are known to be a source for piicking up pseudomonas, another bad microbe that commonly attacks those of us with compromised lungs. I don't mean to be a Debbie-downer. I just want all of us to be as healthy as we can.

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

Jump to this post

@sophie1019 Hi Sophie, thank you for jumping in with your response. Congrats on getting off of the 'Big 3'! I hope that you stick to the info on how to avoid re-infection. You mentioned losing 22 lbs.; I had lost 26 lbs. With the mac under control, I have gained 16 lbs back and continue to gain more. Did you get lab results back recently showing that the mac is gone?

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

Jump to this post

Thank you for the suggestions. I wasn't thinking of the mask outside, but moving the indoor plants to the back porch left me coughing all night.I'm so glad you reminded me of the reinfection possibility. Asthma keeps me inside most of the year and I was ready to jump right in as soon as the air warmed up. I'll be careful.

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

Jump to this post

No I still have a very small cavity in my upper left lobe. The pulmonary doc said he would keep a check on the cavity, and since I feel good, walk everyday, he would give my body a rest. I was also on an iv drip, three times a day. The med was called imipemem, or something like that. No side effects whatsoever. So far, so good. He gave me a prescription of predisone, just in case I start feeling bad. That stuff works very good for me. A 20 MG tab for 5 days. When I take the very first one, it seems to knock out whatever is trying to creep up. He then told me to call him asap, and get in to see him if I start to feel terrible and the predisone don't work…. pray for me as I do for others in this forum…

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