(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

@windwalker

@boomerexpert My best friend bought an adjustable bed and loves it. She let me have her bed while I was visiting there, but was taking ambien to knock myself out, so I don't know if it was comfortable or not. Her parents also have the dual adjustable bed, his & hers. Do you have a spouse to accommodate with the other half of your bed? I am asking because my hubby and I have diff comfort levels in a mattress. He likes super firm, and I like super soft. So we have separate bedrooms, but were thinking of downsizing and sharing a room. Any suggestions?

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I believe you answered your own question with your friends' parents' solution

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@phyllistamara

Have been on Azithromycin and Ethambutol since March 6th. So far so good just get tired often.

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@phyllistamara Good luck — many of us are in there together with you.

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@boomerexpert

@america thanks for clarifying Rita. I also have RA, so have had an adjustable bed for many years…highly recommend the investment. I also invested in a top notch mattress which has many layers, one being memory foam (beneath the top layer)…it's marvelous.

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@boomerexpert what company/brand is your bed? I wouldn't know the best place to look for one. Thnx!

Liked by Dee

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@windwalker got both my adjustable beds from Rooms to Go…presume they've been their brand…both work quite well (gave my first one to my brother when I upgraded and it's still going strong after almost 15 years)

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@boomerexpert

@windwalker got both my adjustable beds from Rooms to Go…presume they've been their brand…both work quite well (gave my first one to my brother when I upgraded and it's still going strong after almost 15 years)

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@boomerexpert Thanks! I never would have guessed that Rooms-To-Go would carry adjustable beds! Who knew??

Liked by Dee

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@tutti and @luvocean, Hi there. I haven't heard from you girls in awhile. Are you doing alright?

Liked by Dee, anniepie

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soflo- Good afternoon- I live in southern New England. What part of the country do you live in? And, nebulizers are safe.

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@merpreb

soflo- Good afternoon- I live in southern New England. What part of the country do you live in? And, nebulizers are safe.

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Merpreb. I also live in Southern New England. I’ve had bronchiectisis and Mac for about 5 years.

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@sounder27– Good morning. I see Dr. Donat in East Geenwich, RI. You will need a referral though. Do you live close enough?

Liked by Dee

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Yes. I live very close to East Greenwich. ..a 15 minute drive. My general practitioner is in East Greenwich. Is your doctor a specialist in MAC?

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Hi. This is irene5. I live in Killingly, Ct.( small world)

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@sounder27

Yes. I live very close to East Greenwich. ..a 15 minute drive. My general practitioner is in East Greenwich. Is your doctor a specialist in MAC?

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@sounder27– Morning- Wow! Another Rhody, hello. I have no idea but call the office and ask. Meanwhile check him out on line.

Liked by Dee

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@glendamoseley do you see this post started by @katemn? Scroll up from here into the blue area where you will see @katemn and her picture icon. You can read that post, plus click on her picture and everything she has ever posted should come up.

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@katemn

Boomer, I don’t mean to frighten her .. but when @pfists Shari said “I have been testing positive for mycobacteria abscesses for a year now.” Sorry .. your statement ” I’m interested in the natural improvement you’re making without meds; think it’s a good sign you don’t need’em, ” is really off base.

I HAVE HAD: MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES . I FOUGHT it for THIRTY months .. it is one of the most difficult mycobacteriums to bring to “stability” .. you do NOT make “natural improvement without meds”. What you DO is create UGLY ABSCESSUS in your lungs instead! Yep! Pretty ugly stuff. I’ve been there .. done that. I can easily speak as a voice of personal experience. Katherine

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For all considering natural alternatives…..

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@windwalker

For all considering natural alternatives…..

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I wish all of you have a safe and well Easter

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