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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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@swrtwdml, waiting for results can be so tough. Three weeks must seem interminable. I hope it helps somewhat that there is more sunshine and lovely flowers blooming. What helps keep your mind off the waiting? How are you feeling?
I am just joining as I was diagnosed with MAC in January by University of Michigan. I had two awful experiences with meds and are due to start again. I am really scared. Thanks, Jane
So sorry to hear you had such a rough beginning. I had a rough start also but my system gradually adapted. Hope this new regime will work for you.
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2 ReactionsDear @katemn,
Wishing you well and a quick recovery. Take some time to ensure care of your OWN health ... there is so much information on this blog, that any new person coming here can read through our experiences. My sincere and very best wishes to you.
Paula
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1 ReactionHope this’ll get through, b/c can’t access
website…get error message “page isn’t redirecting properly”
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1 ReactionI'm having same issuelinda
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1 ReactionHi Jane, welcome to Connect.
You've come to the right place. Being diagnosed and treated for MAC can be very scary. But there are members here who have walked the path before you and help take you by the virtual hand and support you along the way.
Jane, you'll notice that I removed your private email from your initial message. Connect is a public forum, so we advise people not to share their personal contact information in the discussions. We want to keep you safe from unwanted spam.
What meds did you take and which will you be starting? What were the effects of the meds you were taking?
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1 ReactionHi, Jane and welcome to our group! This is the place to be where so many others who have MAC can comfort you on your journey. There are many pages in this discussion group, but I would encourage you to begin reading through them. Katherine (Katemn) is the Mentor in this group and has just recently taken a sabbatical to focus on some health concerns. If you read her posts, they are the most helpful in that she takes what others offer in advice and then redistributes to the newcomers or those who have questions. It will save a bunch of time by just reading her posts to start with.
What kind of meds did you have bad experiences with before? Is this your 3rd go around with MAC? What types of problems did you have before?
Linda
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4 ReactionsHi Linda and Boomerexpert,
When you click VIEW & REPLY in the email generated by this message from me, do you get taken to the discussion page on the website properly?
If not, can you please send me a message using this form: https://connect.mayoclinic.org/contact-a-community-moderator/ and tell me what type of device you are using (desktop, laptop, tablet, phone) and what email service (gmail, Outlook, etc.). Thanks. We'll get this fixed for you.
Colleen, I just clicked on the 'View Post' button and I got an url that
said load failure.