(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!
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Hello Echo R, and I am sorry to have to meet a nice person such as yourself, on a site such as this! This site is the greatest, but having to be on it usually means just one thing...we are sick and need help. When it comes to antibiotics, each doctor prescribes something different. Within the last year, I have been on Augmentin, Doxycycline, Cefuroxime, Bactrim, keflex and hospitalized twice in the last 6 months. Each time I was hospitalized, they could find no reason to give (yet another antibiotic) antibiotics, yet they hooked me up to IV antibiotics. Within a few hours, the antibiotics would begin taking effect, and I would begin feeling wonderfully normal. Yet, after discharge, it takes only a few days and the symptoms return. I am a person that did not need to go to a doctor for decades. The thing about this illness is trying to figure out the cause, so we are all doing detective work to collaborate later. I appreciate you keeping in touch with any pertinent information. I am happy to know you Echo R, and hope you feel better. If interested, here is a rundown of me:
https://connect.mayoclinic.org/discussion/throat-radiation-after-effects-aspiration-suffocating-mucous/
Thanks! : )
Dear cavlover, I am a catlover! Really though, thank-you for support. The (I was going to say the funny thing is) not-so-funny thing is, the hospital that the doctor works from has horrendous reviews. I about fell off the chair the other day. I was looking up medical records for this hospital, and the reviews for it popped up....about 100 of them spanning the last four years. There are only a few that have more than one star out of five, with most people stating they would not have given it any stars. They had to leave at least one star, for the review to be published. It is sad to say, but it did make me feel better knowing I am not alone. That Isn't very nice of me, but human unfortunately. One review summed up all the others when it said to only go to this hospital if you want to die! What The heck is happening to our healthcare system? When I was a kid, my folks always took me to military hospitals because my dad was a 22-year Marine--survived The Chosin" Reservoir conflict in WWII. Those hospitals were the greatest...at least treating kids like me with earaches and such. Now, it IS like they want you to die. Do they? Or, do they just not care when a person gets old?
Thank-you again for the much needed support!
Please take me off your email list you're driving me crazy with 10 to 15
emails a day
@karensarasota You have to change your own settings and/or notifications in your profile to not receive emails. Unfortunately, I’m not sure how you do it so I can’t help. But I’m sure one of the mentors can help you.
Hi Sue thank you for your answer. You have wonderful answers and knowledge about the field of NTM and always are right on the dot of controversy in such a kind way. Does Mayo have a research clinic that they could answer this or National Jewish or NTMIR as well? Could the mentors get this inquiry to Mayo’s Drs of expertise/research. It would be very interesting for all of us for them to answer this. Thank you—
Hi pssurfer, I have used your vest aerobika and nebulizer approach and I think it’s a good one. I wondered what your performomist is I’ve not heard of that. How do you use it?
National Jewish Health has an annual or biennial conference on NTM where all of the latest developments are discussed - there should be one coming up. The presentations are recorded and available on YouTube. I look forward to hearing from them this summer or fall - here is the series from the conference in 2019 https://www.nationaljewish.org/education/pro-ed/live-events/ntm-patient-videos
Sue
Thank you Sue that was an excellent website!!!
I did it in the unsubscribe area at the end of an email and after a year I missed it so much I sign back on!!!!
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