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(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.

jau1 | @jau1 | Mar 22 12:15am
In reply to @criggyf1 "My main concern is vision impairment from Ethambutol. I am already blind in one eye due..." + (show)
@criggyf1

My main concern is vision impairment from Ethambutol. I am already blind in one eye due to repercussions from Multiple Sclerosis. I already have enough issues due to MS itself but feel that blindness would be the absolute worst. I saw that Ethambutol was discontinued in the US at one point. Does anyone have any other viable meds that they are aware of that do not cause vision impairment? Thank you!!!!!!!!!!!!!!

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I can't offer on alternative meds, but I have been seeing an ophthalmic surgeon twice yearly for decades. I was born blind in one eye and have cataract and glaucoma in both eyes. The OS is aware
I'm on MAC meds and after 15 mths on ethambutol, there is no change in my good eyè. If you are not already seeing an eye specialist, then it may be worth getting eye checked. Wishing you all the best. J

REPLY
criggyf1 | @criggyf1 | Mar 22 8:32am

Thank you so very much for telling me your experience. I am seeing a Neuro-Ophthalmologist on Monday and saw a second Ophthalmologist (Sarcoid specialist) last week. Thank you kindly for telling me part of your experience.

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