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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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Hello @pfists, (I can't remember if I asked you if you have a first name?! .. I am so glad you got into Dr. Aksamit .. he will do the right thing for you! He is wonderful. Tell him you are on Mayo Clinic Connect .. we want all the Mayo Doctors to mention it to their new patients!
Don't do ANYTHING about water filters until Dr. Aksamit answers my last email .. OR you can ask him yourself directly and then tell us! When I saw him .. unless I misunderstood .. biofilm would still form on the actual dispensing water faucet despite the filtering .. BUT he was going to get back to me on it. Good luck on your appointment .. be sure to keep us posted! Hugs! Katherine
Terry, I don't have a clue what IFD might mean in this context .. anyone else? Katherine
I will wait to hear from you or Dr Aksamit on the water filters thanks!
My name is Shari
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1 ReactionShari, AND let all know his answer! Hugs! Katherine
You're absolutely correct, Teresa,
Heart = like: If you click the heart symbol, then the person who posted the message will get an email letting them know that someone liked their post
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The other symbol is the bookmark. You can bookmark a post or discussion so that you can find it easily later. To see your bookmarks, go to your profile (click your @username)
Kay, do you remember what meds, if any, that you took to minimize the nervousness, tachycardia, and insomnia? Have another question for you: when you write that your insomnia acts up occasionally -- how often does it act up; how long does this "act-up" last and again what, if any, med(s) do you take for the insomnia. I am using xanax a bit during the day and a couple of times at night to help me sleep-- sometimes it does, sometimes it doesn't. My pulmonologist (clueless about MAC) told me that the susceptibility to antibiotics panel was done and that is why I thought to start meds with ID before Denver as the world was sick around me. My local ID (even more clueless-will change!!!) put me on all 3 at once and the rest is chronicled in my tale. Just got a thyroid antibodies test back and some results were far from normal. Will call and leave message for endocrinologist and see what's what with that. Wonder if meds have put me into a hypo state. Antibiotics give me symptoms of hyper and thyroid results may indicate lower! ... And the beat goes on. Looking forward to your feedback ... now for deep diaphragm breathing (saw the video recommended).
Terry
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1 ReactionColleen, it was just mentioned to me .. rather than an IFD .. could it have been an ID? .. that COULD have meant an Infectious Disease doctor .. they commonly work with MAC. Hope this helps! Hugs! Katherine
@pfists .. Shari I have a favor to ask of you! Would you print out this entire post .. then when you see Dr. Aksamit next month at Mayo Clinic .. would you ask him his opinion on the below? IF he thinks it would be helpful .. we can then recommend it on our Forum .. but we must ALWAYS discuss with our doctors not only our medications .. BUT any/all herbal type things we are taking. Why? Because herbal does NOT mean "inactive" .. they can interact with other medications that we as non medical people are not aware of. REALLY appreciate it if you do this! Hugs to you and good luck at Mayo! Katherine
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Posted by @marzz, 6 hours ago
I have Bronchiectasis in my lungs. i use serrapeptase enzymes to clear mucus in my lungs. i don't cough it up at all. it breaks it down and the body clears away in a few weeks. please google Serrapeptase enzyme and read about. as it also can prevent the blood from clotting which is not good before surgery. also if you cut yourself, you need to clot. I take a lower dose. initially I took a larger dose and it worked VERY VERY well at reducing mucus in my lungs. as soon as I felt better, I lowered the dose and now I am maintaining very well.
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1 ReactionGREAT explanation, thank you Colleen! Especially the one on: You can bookmark a post or discussion so that you can find it easily later. To see your bookmarks, go to your profile (click you @username)
That could be MOST helpful to people! PLUS now that you have posted this way .. your great hints and help .. I can refer to you by name .. Colleen helped me! Katherine
Katherine
I will make a copy and ask him about the serrapeptaze. Sounds great and would like to try also if he approves.
I arm currently using NAC
N acytal cysteine 1000 mg, which I have run by my Dr and he approved of.
It loosens phlem also and I can tell the improvement in myself.
Shari
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