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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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That is good to hear. Then you understand, I certainly was a complete mess. I feel that at least the meds are doing something helpful.. this is the only time I have heard the words "a little better" for the last 3 years. So I have 6 months of treatment under my belt and at least this makes the remaining time and side effects easier. I really am glad to have all of you!!!!
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2 Reactions@jkiemen We are glad to have you too Jo Ann!!
@jkiemen Jo Ann, I fretted and worried also for the longest time. It gets easier to switch your mindset when you start feeling better, and you will. For now, I'd like to share a saying "Worry never erases the fears of tomorrow. It only steals the joys of today".
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1 Reaction@jkiemen Remember, keep your eyes on the prize. And be diligent about taking the re-infection precautions. By doing so, you give your antibiotics a helping hand.
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1 Reaction@jkiemen Yes your side effects should start to get better, took me a long while with the side effects, I still have GERD from them so take omeprazole, but feel alot better than I did at first. Ginger lollies and ginger and licorice tea were my best friends for 2 years. If you want to ask me any questions please dont hesitate.
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1 Reaction@windwalker @nick52 I finally got results yesterday from my bronchoscopy culture test. I do have MAC but my Dr says I am currently asymptomatic. I guess I am in need of finding a new Dr as I got the news over the phone and he could not wait to get off and was not interested in my questions. I am wondering about the asymptomatic status and what I can do for myself to keep this disease from progressing. ANY tips or advice are so welcome. I have a limited insurance plan and will probably need to change it this coming year in order to find a good Dr. (My Dr says he will see me next April...hopefully, not!) Any thoughts on alternative remedies or incorporating health routines into my life to keep this at bay? I am prone to anxiety and the news is sorta upsetting, even though I know it is nowhere as problematic as symptomatic MAC would be. I just do not know how this progresses or if you can stop it from taking over. In my humble opinion, you ladies go way beyond in care and in being proactive with this disease. Terri...just did see your post asking if I had any positive results taking astragalus.....none that I can positively identify but I seem to not become as easily taken down with colds etc as when not taking it. Thank you again for any thoughts.... I am looking at your Worry Post above...choice!!
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1 ReactionAdding...I am taking NAC for lungs...astragalus for immune system, Vit D3K2, Turmeric, Vit C and Zinc when needed....also gymnema sylvestre for blood sugars and Ashwagandha to try to chill out. I walk 30-60 a day and do TM Meditation. I am Vegan and mostly gluten free & shy from white carbs as it gives acid reflux.( I take Slippery Elm for acid reflux.) Thinking of returning to a gym for a workout if that makes sense??
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1 ReactionHi, a fellow TM meditater.
.It makes a lot of sense to go to the gym. One of the many things that keeps me going. I may feel very weak walking into the gym but I walk out feeling better and more alive. A lot of anxiety connected to mac; I'm thankful for TM.
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2 Reactions@flib I thank my lucky stars for TM!! Glad to hear the gym helps you...was thinking anything that builds the body/lungs up can't hurt. Probably blows off some of the angst too. Thanks for your good thoughts.
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1 Reaction@alleycatkate @windwalker @nick52 @jkiemen and everyone listening: I, too am asymptomatic, but even for those who are not, here are the steps I've taken to reduce or eliminate my chances for constant reinfection, and to promote better lung health:
1.I've installed a whole-house water filter of 0.2 microns (recommended by NJ) which filters out all bacteria/viruses, including MAC;
2.I get accupuncture treatments targeting my lungs (and my RA for those with autoimmune disorders)
3.I use Allertrex natural inhaled respiratory support (helps with flares)
4.I avoid hot tubs and public pools
I was dx'd in 2016 but docs think I've had MAC for a while prior to. CAT scans show that although new areas emerge, old areas have healed, so it just moves around rather than spreading. Of course I cannot statistically attribute my continued lack of symptoms and infection jumping vs. growing to these preventive methods I've adopted, but know they make sense, and truly believe they've helped.
Hope they help you, too.
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