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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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Thank you - so thankful for all this info. I will try to do better at visiting. Jacksonville, FL, Mayo Clinic's pulmonary group is not taking appointments, sigh. They are suggesting Lakeland -I call every 3 weeks to Mayo Clinic. I am again on 3 big antibiotics, now a sinus infection so prednisone regiment and antibiotic amox for 10 days. Just seem to be weaker every time.
@bschaper2, The chocolate may do it because of the sugar content. It used to mess me up too. I switched the the 73% cocao and did well with that. Plus that kind has health benefits. I also want to add that I had intolerance to all of the foods listed in my prior posts, I mean BAD...! Now that my infection is totally gone, I have slowly reintroduced some of those things without a problem. (only in small amounts) I still cannot eat gluten very well, especially breads. I don't know if I am lacking an ezyme that breaks it down in my saliva or what. When I chew it, it does not break down, it turns into hard dough; like playdough and cannot be swallowed.
Therapy question: is anyone getting injections of amikacin? This antibiotic is supposed to be good for NTM and bronchiectasis. If so, how often?
Hi nick52, No I don't have breathing problem. I used to walk 2 miles everyday until I hurt my foot. Now I haven't walk in 2 months. when I climb stairs I'm alright. My problem I get tired easy and sometimes I hear myself whissing. I don't know if that comes from not sleeping good or from the brochiectasis. When I was at NJH they did all the deglutition test on me. Dr. Huitt explained it about silent reflux that going on my lungs. Blessing to all. Cila
Thanks Terri M. have been felling well since I'm off on the big 3 but about a week now I feel that when I drink and eat hurts on my chest. I feel that it didn't go down in my stomach. Did you have this kind a problem before? Do you have acid reflux ? Thanks Terri for doing volunteer mentor. I miss Catherine! Cila
Just started INHALED amikacin two days ago. Supposed to take it Monday through Friday (off for the weekends). Pulmonologist said that he might switch me to 3 times a week after a month of this therapy. Terry
@cila , Girl, my heart still hurts over the loss of Katherine. Thank you so much for thinking of her and remembering all that she did for us. If you think you are having swallowing issues, you may want to have that test done that @nick52 has been posting. Yes, I have silent acid reflux. I follow the guidelines of no food or drink three hours before bedtime, and restrict acidic foods. That has helped a lot.
@cila Cila, so glad that you are feeling better also. Hugs!
@128128terry11t, That sounds do-able Terry. Let us know how it works out for you. Inhaled sounds more tolerable than pills.
@unicorn Hi Christa! Been thinking of you a lot, and hope you are on the road to recovery. I have missed you! Thank you for the update about the nitric oxide.