(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.

heathert | @heathert | May 7, 2017

In reply to @katemn "Dear All, where do I begin .. what do I say .. what can explain it..." + (show)

@katemn

Dear All, where do I begin .. what do I say .. what can explain it all. I hardly know where to begin. Right now all I can say is thank you from the bottom of my heart. For so many things. First for being there all this time for EACH OTHER .. for the NEWCOMERS .. and from my heart I thank you for all the caring and support you sent me via your caring posts.

For OH so long I had such brain fog and extreme fatigue that all I did was lie in bed or sit in a chair. In time when I could not sleep for the coughing I would sometimes open my computer and know I did not have the energy to reply to posts but would scan them. As I saw all the wonderful .. caring .. concerned posts from my Connect Community .. I began to save them in a Word document .. copy/pasting your lovely supportive posts to me so I could reread when the times were bad. I labeled it " MAYO CLINIC CONNECT~POSTS WHEN I WAS SICK WITH PSEUDOMONAS ". I cannot tell you what those beautiful notes meant to me in the bad times .. I thank you one and all. We built this Connect Community together .. and oh how wonderful it is.

I go to Mayo Clinic May 9 to see Dr. Dulohery. I am SO anxious to understand what happened to my body .. WHY I was the sickest I have ever been in my life. WHY they are only treating one of the three bacteria diagnosed. SO many questions I have. BUT I will say .. after 9 days of inhaled Tobramycin 2x per day (a pain in the batooty with all the preparation and sterilization!!) I am now sleeping most of the night with less coughing .. AND have little brain fog .. PLUS have energy for about 6 hour per day!! YEAH!!

I have such an attitude of gratitude!! Next week it is Mayo Clinic AND packing for my youngest granddaughter's college graduation for which we depart May 18 and get back the following week. SO .. I REALLY hope to have the mental and physical energy to be back to my WONDERFUL community of Mayo Connect later in the week of May 22 .. hopefully with some insights with what some things I have learned about this Pseudomonas journey. I have GREATELY missed you all .. you have become a BIG part of my life .. like a family .. I will be very glad to be back! With many hugs and gratitude that you are in my life! Katherine

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Oh @katenm So good to hear from you and great that you are sleeping alot better,! Mayo will hopefully help and get your energy back. Tobramycin sounds like a really good med. Hope you are back soon, take care.

ling123 | @ling123 | May 7, 2017

In reply to @katemn "Dear All, where do I begin .. what do I say .. what can explain it..." + (show)

@katemn

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So glad to finally hear from you, Katherine. Hope your appointment brings you answer. Although answer to your question is not the same as treatment that will make you better, I understand how frustrating it can be no knowing. Hope you get well and stronger so you can enjoy your granddaughter's graduation. Thinking of you and sending you best wishes and much love from Beijing, China where I'm visiting my 96-year-old mom and youngest brother's family.

Katherine, Alumni Mentor | @katemn | May 7, 2017

In reply to @katemn "Dear All, where do I begin .. what do I say .. what can explain it..." + (show)

@katemn

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@ling123, Thank you Ling, I have fun memories of Beijing .. and right now I have a magnet on my refrigerator that says "I climbed the Great Wall 2002"! Great memories of your country of origin! Give your 96 year old Mom a hug for me .. you are blessed to still have her! .. and a hug to you also! Katherine

ling123 | @ling123 | May 7, 2017

In reply to @katemn "Dear All, where do I begin .. what do I say .. what can explain it..." + (show)

@katemn

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A hug right back.

Terri Martin, Volunteer Mentor | @windwalker | May 7, 2017

In reply to @katemn "Dear All, where do I begin .. what do I say .. what can explain it..." + (show)

@katemn

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Oh Katherine! So glad to hear of your improvements! Hearing from you is like a ray of sunshine. I am curious; is it possible that the tobramycin is also killing your other two bugs? - Terri M.

Katherine, Alumni Mentor | @katemn | May 7, 2017

In reply to @katemn "Dear All, where do I begin .. what do I say .. what can explain it..." + (show)

@katemn

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@windwalker, Terri you have been a wonderful support throughout this whole ordeal .. for that I thank you! I do not think the Tobramycin is treating anything other than the Pseudomonas .. why? Because in the reports the various antibiotics shown effective against the other two bacteria do NOT show up as Tobramycin. That is one reason why I have so many questions for 3/9 .. WHY are they NOT treating the other two serious bacteria?? Lots of questions! Time will tell! Luckily I did not have any tendon issues with the 28 day of Cipro .. just didn't work for me. IHugs to all! Katherine

Kay Strand | @kaystrand | May 8, 2017

In reply to @katemn "Dear All, where do I begin .. what do I say .. what can explain it..." + (show)

@katemn

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Katherine
We are traveling through Europe right now. Thankful in part to you that we can do great adventures when we are feeling better with these crazy NTMs.

Dr Dulohery is great. I'll bet she'll have many ideas to help you get rid of these dang infections. It will be interesting to hear what she has to say about waiting on treating the other 2...

Good you are better, keep feeling better everyday. We are all pulling for you. Very big hug!
Kay

lindam272 | @lindam272 | May 8, 2017

I thought this was an interesting article in the Bronchiectasis News Today: Removing Antibodies from Bloodstream May Reduce Chronic Lung Infections in Bronchiectasis - here is the link: http://bronchiectasisnewstoday.us5.list-manage.com/track/click?u=52c64784d386bd00ea57ee792&id=4c081c2fc0&e=1d4eb36d9b
Linda

boomerexpert | @boomerexpert | May 8, 2017

In reply to @katemn "Dear All, where do I begin .. what do I say .. what can explain it..." + (show)

@katemn

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Here's to answers. You've always said you go to the right place to get them, and this time will be no different. I'm guessing that with your already weakened system, whatever go in it can, and did, knock you for a loop. We're here for you, just as you've always been there for us. Get well, girl!

Jennifer | @megan123 | May 8, 2017

In reply to @katemn "Dear All, where do I begin .. what do I say .. what can explain it..." + (show)