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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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Janet, so glad you are checking in! AND I can ONLY speak for what Dr. Aksamit told me. When I was first diagnosed .. I was SO worried about being contagious because we have ten grandchildren .. my husband had CLL. Dr. Aksamit told me MAI/MAC was NOT contagious!! Plus now two years ago my husband is on chemo .. AND Dr. Aksamit knows about it .. I feel confident Dr. Aksamit would NOT put my husband in jeopardy .. he would have warned me!
It may not be quickly .. but if you want me to email Dr. Aksamit and ask him yet again for your peace of mind .. just let me know and I will email him. He is VERY busy .. I don't know how quickly I'd get a reply but I'd sure do it! Please have peace about this .. I trust Dr. Aksamit .. don't worry or feel terrible .. I am sending you a BIG hug!! Katherine
Hello Kathryn, tell us how YOU are getting along! Hugs to you! Katherine
Hello Fran, so glad you have your appointment set up .. the waiting game is tough but at least you have them. I think the Infectious Disease doctor will be the most important in my opinion. They should really get the ball rolling .. may well be able to tell you what is going on with some of these symptoms. I know that I use two inhalers .. twice a day for breathing/lung issues. They really help me. It took a lot of trial and error however because so many inhalers caused side effects .. primarily triggering my migraines.
I really have not had the sense of the heart skipping etc .. these are REALLY symptoms you should discuss immediately with your doctor. It helps me to have a list: "Question to Ask the Doctor". You can google this .. I have cut and pasted SEVERAL lists I found online and came up with my own list that feels right to me. I take this written list with me (I have it on my computer and just print it out each time I go) .. and leave spaces between for the answers. That way I have a record of each visit. I find this helpful to go back and read because I can't always remember everything that took place during every visit!
Can anyone else chime in if they have ever had Fran's symptoms? Just hasn't happened to me. Fran be sure to let us know how your appointment go!
By the way, because I feel I probably have a bit of a compromised immune system .. and my husband definitely does .. when we travel I make SURE to take Clorox Cleaning Wipes-12 count packets and wipe down ALL around the airplane. Just google how dirty the airplanes are today .. it will tell you just where to clean! Frankly I did not do this in July .. ended up with a horrid virus and sick for 3 weeks! We also use Halo Oral Antiseptic according to directions .. https://smile.amazon.com/Halo-HL00101-Oral-Antiseptic-Citrus/dp/B009240FPK/ref=sr_1_2_a_it?ie=UTF8&qid=1474326247&sr=8-2&keywords=halo+spray+antiseptic
Do to these two precautions .. have not gotten sick on an airplane .. IF I do both! Just thought I'd share .. hope you have a GREAT time at your step daughter's wedding .. what a fun time! Sending you a hug! Katherine
Janet, I just googled it .. don't you worry anymore!! This is what I found .. it is NOT contagious!! Hugs to you! Katherine
http://maclungdisease.org/frequently-asked-questions
Frequently Asked Questions. A: “Mycobacterium avium intracellulare” (MAI) or “Mycobacterium avium Complex” (MAC) is an atypical NON-TB germ (micro-organism). MAC is related to the tuberculosis germ, but is not contagious and the MAC microbes live in the environment.
Frequently Asked Questions - MAC Lung Disease maclungdisease.org/frequently-asked-questions
Linda, what GREAT news in the lungs area! I would be really interested to hear what your doctor recommends to treat the chronic coughing for your Bronchiectasis .. that is currently the bane of my existence! The constant coughing! I wear a SI belt 24/7 .. for whatever reason that tightness seems to help my lower back pain from all the coughing but other than that I haven't been able to figure out much else! Let us know any tips or treatment they recommend!
Wow .. on the heart issues .. no fun. Keep us posted on what is going on .. we are all here for you! Sending you a hug! Katherine
Paula, you are just too quick! You answered so well .. sorry I duplicated you! I was just going down the line! How are YOU doing? Katherine
Hi Terri, it IS frustrating!! You are doing your level best to take care of yourself .. doing all you can to do you "due diligence" .. break you neck to do the right thing .. and what happens? Find road blocks. Frustrating!! But as you well know .. NO ONE is going to care about your body and health as much as you do .. so you just go on fighting!! If YOU cannot be your best advocate .. WHO WILL be? Thank heavens you are there with family .. that must be at least some comfort .. family can also be frustrating at times .. but at least they love you! Let us know how it goes .. when you get in etc.
In terms of the workshop .. if you are notified of when it is available online .. would love to know about it! Also IF/WHEN you have time and energy to do it .. could you share some of the things you learned at the workshop? I think we would all be really interested. So anyway .. keep us posted and know we are here for you! Hugs! Katherine
Hello apportee (do you have a first name?!) .. you are too funny! I feel the same way about the coughing .. I get embarrassed .. my husband is a saint to put up with it! In fact in July I traveled with a dear friend that had NOT slept with me for years .. I warned her big time because I knew she would be shocked by the coughing .. she WAS!
I had to google the Barium Swallow .. interesting. Let me know what they find out with the Endoscopy. I wonder .. have you been told you have Bronchiectasis .. that is what I attribute my coughing to. Keep us posted. Sending you a hug! Katherine
Thank you so much for your suggestions and for your encouragement, Katherine! The reason I got assertive about my appointments was because of your encouragement before you left on your vacation. So thank you very much. i have an appointment with my GP tomorrow morning and will mention my new symptoms to her while I wait for my other appointments. It is a weird feeling to sense a skipped heartbeat. And today, to top it all off, I woke up with severe vertigo. Every day is an adventure, that's for sure. Hugs back at you!
Fran, I REALLY am glad you are seeing you GP tomorrow .. I was reluctant to say too much but I was really concerned about your heart symptoms .. just NOTHING to fool around with. May turn out to be nothing .. but again .. be pro active! MUCH better safe than sorry. I don't know a lot about it .. but I've read that women's heart issues are very different than mens .. .that we need to be more aware because our symptoms are not similar. Really glad you are going tomorrow. Let us know how it goes! Hugs! Katherine