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Katherine, Alumni Mentor
@katemn

Posts: 1501
Joined: Nov 21, 2011

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

Posted by @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

REPLY

@windwalker I also have a portable nebulizer, it’s by Omron. Battery operated. It’s very light, small and quiet. But the Aerosure Medic is more like an Aerobika to use for lung clearance and to increase lung capacity. It was a bit expensive, ($229 Australian dollars), but I bought it anyway. I’ll try it when I get home in two weeks. I’ll keep you posted on how it works.
Gina

@ginak Sounds good! Gina, please tell me you held a koala bear.

Liked by ginak

I was diagnosed by a community pulmonologist in AZ a couple of months ago, but decided to get a second opinion at Mayo. There's been an interesting turn of events regarding my diagnosis because my AZ Mayo pulmo consulted with a pathologist colleague at Mayo Rochester who reviewed my culture slides and did not see any MAC, but did see fungi, so now they think the infection and cavity is due to fungal growth. Not sure why the fungi weren't seen the first time around by the AZ state pathologists. He believes there could have been MAC in the culture, but that it was secondary to the fungal infection and that there may have been culture contamination. If there was contamination, still don't understand why the Mayo pathologist isn't seeing MAC on the slides though. Anyway, still need to get more testing to find out if I have a gene that puts me on the 'mild' CF spectrum (also being sent to Rochester). Apparently, 3 to 4 percent of the population have a CF gene, but are asymptomatic or have very mild symptoms. All this to emphasize the importance of seeking second opinions from experts in the field.

Liked by kristiemlove

@extracare808

I was diagnosed by a community pulmonologist in AZ a couple of months ago, but decided to get a second opinion at Mayo. There's been an interesting turn of events regarding my diagnosis because my AZ Mayo pulmo consulted with a pathologist colleague at Mayo Rochester who reviewed my culture slides and did not see any MAC, but did see fungi, so now they think the infection and cavity is due to fungal growth. Not sure why the fungi weren't seen the first time around by the AZ state pathologists. He believes there could have been MAC in the culture, but that it was secondary to the fungal infection and that there may have been culture contamination. If there was contamination, still don't understand why the Mayo pathologist isn't seeing MAC on the slides though. Anyway, still need to get more testing to find out if I have a gene that puts me on the 'mild' CF spectrum (also being sent to Rochester). Apparently, 3 to 4 percent of the population have a CF gene, but are asymptomatic or have very mild symptoms. All this to emphasize the importance of seeking second opinions from experts in the field.

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Since a bronchoscopy on Tuesday, I have been told that the cultures are clear, but the fungi check which takes many weeks is for the MAC/MCI. However, bronchiectasis with chronic infection (MCI) was noted by 3 different physicians on an abdominal CT scan, an abdominal MRI and a HRCT lung scan, so I figure it is going to be there on the path report. Never knew I had a problem until a couple weeks ago when it was noted on a routine abdominal scan following my breast cancer. So, added another doctor (pulmonologist) to my list and looks like an ID doc in my future. My breast cancer was an ATM gene mutation, so who knows if the bronch was a gene-thing also?

@lnduh66

Since a bronchoscopy on Tuesday, I have been told that the cultures are clear, but the fungi check which takes many weeks is for the MAC/MCI. However, bronchiectasis with chronic infection (MCI) was noted by 3 different physicians on an abdominal CT scan, an abdominal MRI and a HRCT lung scan, so I figure it is going to be there on the path report. Never knew I had a problem until a couple weeks ago when it was noted on a routine abdominal scan following my breast cancer. So, added another doctor (pulmonologist) to my list and looks like an ID doc in my future. My breast cancer was an ATM gene mutation, so who knows if the bronch was a gene-thing also?

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@lnduh66, not sure what you mean by "fungi check for MAC'. MAC infections are caused by mycobacterium which are killed by antibiotics. Fungal infections are caused by fungi and are treated by anti-fungals.

If you had your bronchoscopy on Tuesday, it would take 6 weeks minimum to grow enough culture and speciate MAC bacteria (unless you're going through NJH). Not sure exactly how long the fungal cultures take, but certainly no more than 8 weeks.

Liked by tdrell, tdrell

@windwalker

@ginak Sounds good! Gina, please tell me you held a koala bear.

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@windwalker yes I did. And fed a kangaroo.

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@extracare808

@lnduh66, not sure what you mean by "fungi check for MAC'. MAC infections are caused by mycobacterium which are killed by antibiotics. Fungal infections are caused by fungi and are treated by anti-fungals.

If you had your bronchoscopy on Tuesday, it would take 6 weeks minimum to grow enough culture and speciate MAC bacteria (unless you're going through NJH). Not sure exactly how long the fungal cultures take, but certainly no more than 8 weeks.

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@extracare808. I am sure you are right. I think I got things messed up when I talked to the PA. My appointment with the doctor wasn't to be until next Wednesday (27th), but the day after my bronchoscopy I started feeling terrible. I got in to see the PA and she told me this which I apparently misunderstood. She did order steroids for a viral infection that worked great and within a day was back to normal. No aching and no cough. Thanks for bringing that to my attention. This site has been so helpful to me!.

@ginak

@windwalker yes I did. And fed a kangaroo.

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@ginak Aaaaawwe……So cute!!! Koalas seem so sweet. What an experience you had! You are a beautiful woman too. I swear, I think they need to rename MAC the 'Pretty Girl's Disease', How is it that every single member on here is a pretty girl? I am sure there are a few pretty guys milling about this group as well. Anyhow, are you home now?

Liked by ginak, kristiemlove

@ginak

@windwalker yes I did. And fed a kangaroo.

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@ginak I love Australias animals,we go there quite often as not far from us.

Liked by ginak

@windwalker

@ginak Aaaaawwe……So cute!!! Koalas seem so sweet. What an experience you had! You are a beautiful woman too. I swear, I think they need to rename MAC the 'Pretty Girl's Disease', How is it that every single member on here is a pretty girl? I am sure there are a few pretty guys milling about this group as well. Anyhow, are you home now?

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@@ windwalker. Me too, me too, I'm a pretty girl. Flib

Liked by ginak

@windwalker

@ginak Aaaaawwe……So cute!!! Koalas seem so sweet. What an experience you had! You are a beautiful woman too. I swear, I think they need to rename MAC the 'Pretty Girl's Disease', How is it that every single member on here is a pretty girl? I am sure there are a few pretty guys milling about this group as well. Anyhow, are you home now?

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@windwalker , Aww thank you. I agree with you about all the pretty women! I’m Still here for one more week. I’m now in Canberra to just visit with my daughter and her new in-laws and then I’ll be heading home. I noticed while I was in Cairns by the beach, which is very warm and tropical, I wasn’t coughing as much. Even during my lung clearance with the Aerobika and nebulizing the saline. My daughter commented on it also. I think it was the ocean air!! Now that we’re far inland and in a bigger city, my throat clearing and intermittent cough has returned. Anyone else notice a difference if they’re by the ocean?

@heathert

@ginak I love Australias animals,we go there quite often as not far from us.

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@heathert Australia seems far away from everywhere! I joked with my daughter that I had to come into the future to see her! 16 hours ahead of NYC! Where do you live?

Liked by heathert

post for Flib

Harwell1b

@ginak

@heathert Australia seems far away from everywhere! I joked with my daughter that I had to come into the future to see her! 16 hours ahead of NYC! Where do you live?

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@ginak I live in Wellington New Zealand, 3hr 50min flight to Aussie. We are going to Surfers Paradise in May for a friends 50th. Looking forward to it. Hope you are having a great time, dont forget to leave the wildlife behind! Did you go the the great barrier reef

@heathert You are close! It took me a total travel time of close to 25 hours (including a 3 hour layover) to get from NYC to Sydney. God willing if I come again next year I would love to visit New Zealand while I’m this close. We did a tour to the Outer Reef when we were in Cairns. I was a little worried about the jellyfish, but we did enjoy it. The only thing I’m bringing home are some t-shirts. Lol

Liked by heathert

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