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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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Is it the fluid extract for Adults and Children or the Honey syrup herbal supplement? Ordering now along with the cough drops.
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1 Reaction@sounder27, It sounds like your GERD may be the culprit behind your lung issues, which in turn is hampering your ablation. Have you had time toread up on how to control acid reflux?
I have been taking omeprazole for several years, sleep on a wedge and eat my last meal of the day at 4. Beyond that I should say that I probably do not follow the diet very well. I do have a couple of cookbooks for acid
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1 ReactionI would like to hear about people who have NTM but it is somewhat mild - cough throughout day, excess phlegn, so not being treated except with pulmonary clearing, flutter valve. Does it improve? Do you eventually have to go on meds?
Your suggestions have spurred me to consider becoming more disciplined in my approach to my multi faceted problems. It seems one is responsible for the other like a cascade of physical effects that influence the others. Sometimes it’s difficult to find the point of origin and begin there to improve the big picture. Thank you for pointing out the place to begin the improvements and encouraging me to action on my own behalf. I am grateful for finding this forum to share our experiences regarding our methods and products that improve the quality of our day to day coping with all the health issues that we share.
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2 Reactions@kristiemlove ... sorry for the delay!
The great Broncolin honey syrup with Propolis . All natural. Too, the cough drops are great!
Jan in Fl
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2 Reactions@windwalker ... Wanted you to know Barb, Eva and I met for lunch today near Orlando. It was great to meet face to face with other MAC/Bronc
patients. If you live near Leesburg, Clermont , Orlando contact me @janovr. We plan to meet again in several months for lunch
and share new ideas. Jan
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1 Reaction@janovr Jan, that is wonderful! At least there is one silver lining to this disease; we are creating new friendships. I live in S,C., but if I ever get down your way again, I will look you up. I have one member, @nannette, who lives 40 mins from me. We see each other occasionally and do lunch. There is a member visiting my area for a winter vacation that I plan to meet as soon as she and I are over our colds. It is so nice to be with other people who understand our limitations. Just yesterday, I met with a long time friend of mine yesterday, and had to explain my limited energy AGAIN to her. She acted annoyed that I couldn't just pack up my house and move all at once. Well, I am annoyed with her that she has to keep asking me why I don't have energy. Geeze!
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1 Reaction@janovr What is Eva's @name? I don't know which member she is. Thnx!
@kristiemlove Did you get the Broncolin at a regular drug store or do I need a prescription?