1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- 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
- 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!

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

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 25, 2019
In reply to @ginak "@windwalker , Aww thank you. I agree with you about all the pretty women! I’m Still..." + (show)
@ginak

@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?

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@ginak, Yes, I am doing so much better by the ocean. If you think about it, it is akin to doing a saline treatment, only naturally. The other thing is; the air is cleaner because the ocean breezes are constantly clearing it out & bringing fresh in from off of the ocean.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 25, 2019
In reply to @heathert "@ginak I love Australias animals,we go there quite often as not far from us." + (show)
@heathert

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

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@heathert Oh, you lucky dog!

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 25, 2019
In reply to @extracare808 "I was diagnosed by a community pulmonologist in AZ a couple of months ago, but decided..." + (show)
@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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@extracare808, Hi. Did they test you for Valley Fever also? (coccidioides immitis- fungus) I had that when I lived in Az. It ate a hole in my lung. I was quite ill from it for two months. Many people get this when they go to Az.

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1 reply
sounder27 | @sounder27 | Feb 25, 2019

Has anyone ever tried a Himalayan salt room... and or a Himalayan salt inhaler with any success?

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2 replies
pfists | @pfists | Feb 25, 2019

Hi @sounder27
I have been to a salt room. They are very cool made entirely of pink himalian salt. Very relaxing inside. But you would need to spend lots of time in there for much benifit.
The men who mined Himalayan salt noticed that their lung issues decreased or went away and they associated it to working in the salt mines. I seen the salt pipes for sale but just think the salt nibs are the best way to go.
Living by the ocean air would be ideal but we can't all do that either.
I do have Himalayan salt lamps in my house but not because they make much difference in the air quality I just find them relaxing.

Shari

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extracare808 | @extracare808 | Feb 25, 2019
In reply to @windwalker "@extracare808, Hi. Did they test you for Valley Fever also? (coccidioides immitis- fungus) I had that..." + (show)
@windwalker

@extracare808, Hi. Did they test you for Valley Fever also? (coccidioides immitis- fungus) I had that when I lived in Az. It ate a hole in my lung. I was quite ill from it for two months. Many people get this when they go to Az.

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Hi Terri. Yes, they gave me 6 different cocci blood tests. In fact, cocci was what the ER strongly suspected I had after my bout of hemoptysis. They say that the false negative rate on cocci tests can be as high as 70%. The culture isn't showing cocci, but some other fungi (which had a very long name I can't remember).

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boomerexpert | @boomerexpert | Feb 25, 2019
In reply to @sounder27 "Has anyone ever tried a Himalayan salt room... and or a Himalayan salt inhaler with any..." + (show)
@sounder27

Has anyone ever tried a Himalayan salt room... and or a Himalayan salt inhaler with any success?

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@sounder27 I have, and do...helps as does accupuncture

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heathert | @heathert | Feb 25, 2019
In reply to @windwalker "@heathert Oh, you lucky dog!" + (show)
@windwalker

@heathert Oh, you lucky dog!

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@windwalker Maby we should have a get together in Aussie one day.

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1 reply
heathert | @heathert | Feb 25, 2019
In reply to @ginak "@heathert You are close! It took me a total travel time of close to 25 hours..." + (show)
@ginak

@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

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@ginak wow that is a bit of flying for you, not cheap either, enjoy your t-shirts!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 25, 2019
In reply to @heathert "@windwalker Maby we should have a get together in Aussie one day." + (show)
@heathert

@windwalker Maby we should have a get together in Aussie one day.

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@heathert Wouldn't that be a hoot?!! You just never know where I mightl turn up!

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