(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.

Jane S. Brown | @macjane | Nov 7, 2018

I love how you think!!!!!!! Jane

taya | @taya | Nov 7, 2018

In reply to @alleycatkate "@windwalker @america ...Sorry that you are both having problems... I hope you get better soon!! Hugs..." + (show)

What about the shingles vaccine? It is very expensive, is it worth the $?

ling123 | @ling123 | Nov 7, 2018

In reply to @taya "What about the shingles vaccine? It is very expensive, is it worth the $?" + (show)

@taya This article by the Centers for Disease Control and Prevention provides some useful information about the shingles vaccine. If you are on Medicare or have health insurance, the cost of vaccine should be covered. https://www.cdc.gov/vaccines/vpd/shingles/public/zostavax/index.html

tdrell | @tdrell | Nov 7, 2018

In reply to @margiebanks "@windwalker Good morning all. I am looking on Amazon to buy an Acapella green PEP device..." + (show)

@margiebanks …..another resource for hearing re which immunizations are suggested might be to call the local health department and ask an RN. They should have access to latest CDC and state recommendations. tdrell

tdrell | @tdrell | Nov 7, 2018

In reply to @ling123 "@taya This article by the Centers for Disease Control and Prevention provides some useful information about..." + (show)

@taya be aware there seems to be a shortage of getting the new shingles vaccine....so it might be awhile....our local Walgreens where we get our shots has a wait list....the required amount is to get two shots ….separated by several months.tdrell

heathert | @heathert | Nov 7, 2018

In reply to @helem "Yes, my whole family thinks I’m a germ freak. My brothers think I am faking, but..." + (show)

@helem Helen I totally understand the germ freak thing, others do not understand at all but we have to avoid germs totally. My daughter has a cold and I am very concerned, washing my hands alot and wearing a mask.

Jane S. Brown | @macjane | Nov 7, 2018

In reply to @irene5 "@ling123 Thank you sooo much Ling. FYI our first Chinese child (Yu Chun) is getting married..." + (show)

Irene, You have helped me in past so I hope now that I am reviewing 4,000 plus e-mails, I came across yours and hoped that you have had a wonderful day with the wedding. Jane Brown

Margie E | @margiebanks | Nov 7, 2018

In reply to @tdrell "@margiebanks …..another resource for hearing re which immunizations are suggested might be to call the local..." + (show)

@tdrell another great idea, thanks so much!
Margie

irene5 Irene Estes | @irene5 | Nov 7, 2018

In reply to @macjane "Irene, You have helped me in past so I hope now that I am reviewing 4,000..." + (show)

@macjane Thank you Jane. That’s nice of you.The wedding was beautiful. My sweet little Yu Chun was gorgeous. I barely made it through the church mass. My husband had to bring me home as I was just too sick and started throwing up. My oldest daughter commented “ life isn’t fair.” She has always been “my person.”What I hate the most is how much my kids and grandbabies worry about me. I hate that more than anything. My daughter has been sending me pics and brought me cake yesterday as they aren’t taking a honeymoon till the summer because of work and school. A friend who is a nurse told my husband I had used every bit of energy to just be there. I am usually ok from the neck up. On Saturday even that was problematic. In spite of this disease and recent setback I know I am truly blessed.

ling123 | @ling123 | Nov 7, 2018

In reply to @irene5 "@macjane Thank you Jane. That’s nice of you.The wedding was beautiful. My sweet little Yu Chun..." + (show)

@irene5 So sorry you had to suffer through your daughter's wedding. Your daughter is right. This really isn't fair to you. I admire your spirit that you still feel blessed despite what you are going through. I'm sending my best wishes and warmest thoughts hoping you will get better very, very soon and have enough strength to enjoy your family to the fullest.

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