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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 ...Ooops...mispelled that herb in case you are interested....Gymnema Sylvestre. Sorry.
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1 ReactionIf anyone is interested, there is a study called The WILLOW Study, on bronchiectasis treatment looking for candidates. If anyone wants to check it out or see if they qualify. Here is the link.
https://willowstudyportal.com/en-US/public?utm_source=bronchiectasisnewstoday%2CBRO%20E-mail%20List&utm_medium=pag%2Cemail&utm_campaign=5eafe06f4e-EMAIL_CAMPAIGN_2018_08_28_07_10_COPY_01&utm_term=0_d9df0e1c03-5eafe06f4e-71479961
@migizii thanks for sending this.....I live too far away to consider even attempting to qualify but it would be interesting to hear what the study is looking for if someone decides to pursue it (I live in northern Minnesota).
@ginak I can't get the site to open for me. I am looking for study center near zip of 53121. Nothing opens
@jkiemen Hi Jo Ann - I looked - the nearest site for you would be Ann Arbor Michigan.I'm guessing that is about 350 miles for you?
Good morning where do i find the study is there pne near tampa fla 33624
@sueinmn oh Thank you
I could make the drive
@janovr where in FL are you? I'm in Palm Harbor
@windwalker...good news!
@migizii I think you were responding to me about the study. If you were, when I clicked on the link they asked me to put in my zip code to find the study in my area. We’re you able to do that? Or maybe I sent the wrong link, I might have sent the link after I put my zip code. Maybe you could google the WILLOW study and see if you find something in your area.
Gina