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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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@ling123, and @unicorn, I think you are BOTH smart! Both my husband and I religiously get the flu shot each year .. BUT this year lo and behold we BOTH (I'm sure gave it to each other) got DEATHLY ill from Influenza B!! We told by our doctor it was just ONE of the flu NOT covered by the flu shot .. AND with both of us with compromised immune systems .. sure enough .. it hit us hard! So forewarned is forearmed .. as the saying goes! Hugs! Katherine
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1 ReactionHi Forum Friends
I'm taking a break from the forum. The emails are overwhelming right now and I want to focus on many things I need to get done in life. I simply don't allow myself to delete email, so will disconnect and talk with you all later.
Thank you nice friends for all your help for the last almost year!!
Kay Strand
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1 ReactionThat's what Dr Daley told me in May when I was at NJH. The nurses mentioned the same numbers also.
@colapyrus, Jan, THANK YOU for the info! I will add this" Dr Daley told me in May" .. always good to quote the source! Hugs! Katherine
@kaystrand, Kay .. happy for you .. live your life and enjoy the summer! Come back any time you choose .. we will be here! Hugs! Katherine
Yes I get flu and pneumonia shots every year also. I also wash my hands all the time, of course, when I come home. If I even think my throat is getting scratchy, I gargle salt water like a lunatic, and that seems to take care of it, so far, so good! xo
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1 ReactionI get flu shots every year as well. But they are not fool proof. Although I've never had flu and only had cold a few times in the past 30+ years, I've reached the age when my body is becoming more vulnerable. Having bronchiectasis & MAC is not helping the situation. So I need to be more mindful and careful from now on.
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1 ReactionHi, it's hard to digest all of those words of wisdom but I know that it comes from a place of love & it's what I need to hear. There's so much going on with my body that I can barley keep up. But you are absolutely right, I am NOT my disease...it doesn't define who I am...I've been letting it do just that. I've been living in a place coming from fear. It serves me no good whatsoever. I need to keep working on this...keep reminding myself of this negative thinking & how it's hurting me & controlling me & consuming me, leaving me with little to none to put towards the things that I love & make me happy. I'm still struggling with this... how to live a happy, intentional life while still having illness (lung disease, heart failure, diabetes, neuropathy) . I need to learn this!!! These illness can't define me... thanks for your sincere words of advice, Katherine. I will work on educating myself more & on having a better, more positive attitude in life! I just need to keep at it!!! ~Jen
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1 ReactionI had never heard of it taking up to two months to grow the mycobacterium
in a lab dish. I would think they would have to do the same with whatever they
washed out with a bronch. Most labs don't test for the strain either. The report
generally comes back either positive or negative. They are usually very vague.
Learned at the conference that they are trying to change that. They want all MAC
to be typed as to what specie it actually is.
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1 Reaction@chinasmom,
I think I would look for a new dr. all of that did not sound right to me.
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