(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

@tdrell

@alleycatkate…..I love dogs….still Mourn the passing of our daughter’s pug 2 years ago. But am grossed out when George the pug mixture who was rescued from humane society licks and kisses daughter right on lips. The Milwaukee newspaper had articles about people loosing limbs after acquiring this rare but vicious bacteria transmitted Thru kissing their dogs. The new amputees were not immunocompromised. I shared the articles with daughter….to no avail.tdrell

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@tdrell, @alleycatkate, @heathert, I just saw a program last night where a guy got tapeworms from his puppy that would kiss him on the mouth. The puppy was treated for , but not him right away because he didn't know he had them. One got into his spleen and turned into a cyste. 40 years pass and the cyste became malignant and his liver enlarged 10 times the size it should have been. This caused other serious health issues which cleared up once the spleen was removed. So, yes, kissing dogs on the mouth is gross and can be dangerous.

Liked by tdrell

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@windwalker

@tdrell, @alleycatkate, @heathert, I just saw a program last night where a guy got tapeworms from his puppy that would kiss him on the mouth. The puppy was treated for , but not him right away because he didn't know he had them. One got into his spleen and turned into a cyste. 40 years pass and the cyste became malignant and his liver enlarged 10 times the size it should have been. This caused other serious health issues which cleared up once the spleen was removed. So, yes, kissing dogs on the mouth is gross and can be dangerous.

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@windwalker…gross quota for the day. Haha. Sadly, the man was very unobservant of his animal. You can always tell an animal has a tape as you see “little rice kernels” on their butts or on anything they lie upon. Smoochin’ the pooch is not a good idea. (Just kiss their heads to show ya love them.) 😘

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@america

Hi dear! I have a bird for the pass years! He’s a Conure and he’s wonderful. Now after I read your post I’m concerned about my heath. I would break my daughter s heart if I have to give him up. Thank for the information.

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Alll I know is the doctor said to never bring birds in your home. Not good for humans. People that work in chicken places get this disease as well. I wished I had known too. My husband did not clean the cage like he should have and it was awful.

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@spencersok

@ @cindyrue, What are some of the food you eat to help your immune system. Reason I ask, my wife is immune system is suppressed, tired and weak all the time.

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Fruits, veggies, bone broth. I take bone broth capsules. Also turmeric capsules is good to take.

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@boomerexpert

@cindyrue @america one doc's opinion on birds is not overwhelming evidence of a problem…many docs have made erroneous judgements about lots of things. Before depriving a critter who knows only your home as his/hers, please do much more research…assuredly birds have nothing to do with contracting MAC or Bronchiectasis…nor immune disorders (I have RA and don't blame my cats for it…).

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I looked it up and you can get this disease from birds feces over a number of years of inhaling the dried particles in the air if your immune system is compromised. I am allergic to cats and I have a cat, but take allergy pills. You can also get his disease from dirt and water.

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what about chicken manure on plants…

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@bevmac

what about chicken manure on plants…

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@bevmac, @cindyrue, Chicken manure on plants…..gross! Best to avoid that. Remember, any foreign particles of any kind can be harmful to your lungs, especially if you have bronchiectasis.

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@bevmac

what about chicken manure on plants…

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No! Chickens are a source for MAC and other yucky stuff. Vegetable gardeners are cautioned by food safety experts to keep chickens and their droppings out of the garden. Yes, I know your Grandma always let her free-range chickens scratch in her gardens, but that was before we knew a lot about antibiotic resistant bacteria, ecoli, etc…

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Hi All, I was wondering if anyone on here has ever heard of, or used, an “Aerosure Medic+ Breathe Easier” device? I’m in Australia right now and I see it for sale at the local chemist (pharmacy), and I’m wondering if it would be worth buying here since I don’t believe it’s sold in the US. It is a battery operated IMT (Inspiratory Muscle Training) and oscillating PEP (Positive Expiratory Pressure) device for use by COPD and bronchiectasis patients. Seems like it might be a battery powered version of an Aerobika. Any thoughts are appreciated, especially from anyone in Australia who may be using it. I’m leaving in 3 days so I don’t have much time to decide.
Thanks
Gina

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If it isn’ too expensive, I would
personally be excited to give it a try.
In fact, I wish I could! If you do get it, please let us know what you think.

Liked by ginak

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@ginak

Hi All, I was wondering if anyone on here has ever heard of, or used, an “Aerosure Medic+ Breathe Easier” device? I’m in Australia right now and I see it for sale at the local chemist (pharmacy), and I’m wondering if it would be worth buying here since I don’t believe it’s sold in the US. It is a battery operated IMT (Inspiratory Muscle Training) and oscillating PEP (Positive Expiratory Pressure) device for use by COPD and bronchiectasis patients. Seems like it might be a battery powered version of an Aerobika. Any thoughts are appreciated, especially from anyone in Australia who may be using it. I’m leaving in 3 days so I don’t have much time to decide.
Thanks
Gina

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@ginak Hey girl! How is Australia? You can try Googleing that product and add the word 'reviews' and then see what others think of that product. @megan123 Jennifer has a very good nebulizer. Hers is super fast.

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@windwalker Hi Terri, Australia is beautiful! Thanks for the suggestion, I did look at the reviews and everyone says how great it is and that it’s improved their breathing and lung clearance. I’m just always a little skeptical about reviews sometimes. I also looked to see if I could order it on line but I can only find it on an Australian website that says ships to Australia only. I think I’ll buy it and give it a try.

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@ginak

@windwalker Hi Terri, Australia is beautiful! Thanks for the suggestion, I did look at the reviews and everyone says how great it is and that it’s improved their breathing and lung clearance. I’m just always a little skeptical about reviews sometimes. I also looked to see if I could order it on line but I can only find it on an Australian website that says ships to Australia only. I think I’ll buy it and give it a try.

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@ginak, Very good. I did find out the brand that @megan123 (Jennifer) uses. It is by Pari and it is called the VIOS model. I own a small travel size pari that I love, but it is not as fast as hers. I still need to look into whether 'faster' may not be better for the inhalable antibiotics. @tdrell, Terri, is this something you have knowledge about?

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@windwalker

@ginak, Very good. I did find out the brand that @megan123 (Jennifer) uses. It is by Pari and it is called the VIOS model. I own a small travel size pari that I love, but it is not as fast as hers. I still need to look into whether 'faster' may not be better for the inhalable antibiotics. @tdrell, Terri, is this something you have knowledge about?

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Terri…no I am sorry…I have no info on this…terri

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@windwalker

@ginak, Very good. I did find out the brand that @megan123 (Jennifer) uses. It is by Pari and it is called the VIOS model. I own a small travel size pari that I love, but it is not as fast as hers. I still need to look into whether 'faster' may not be better for the inhalable antibiotics. @tdrell, Terri, is this something you have knowledge about?

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The respratory therapist at my clinic told mt the Vios Pari (not the small travel version) is the portable unit of choice for their team because it is reliable, fairly fast so people will finish the whole treatment, reasonably priced, parts & supplies are easily available. Downside is I find it noisy, but they last for YEARS. He also said speed of delivery isn't as critical as making sure you are inhaling deeply. He also said to shut off the neb and catch my breath completely if I get a coughing fit during a treatment, otherwise I'm just expelling the meds. First time I ever heard that, and my kids and I have nebbed for at least 30 years.

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