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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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I have found that physical activity is vitally important for improving quality of life in my lung-compromised situation. Anything that gets me breathing more vigorously seems to "clean out" my lungs, and I feel better and have more energy for hours afterward. I'm surprised the medical profession doesn't promote exercise more - it's clearly one of the best "medicines"! Thanks for your post - inspiring!<br />
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2 ReactionsColleen, I ditto your thoughts on physical activity being vitally important for those with MAC. And I too wonder why the medical profession doesn't promote exercise more!! I'd love a script from my Doc saying I need Pilates 3 times a week!! A year after being diagnosed with MAC, I started taking Pilates at work (2-3 times a week, 45 minutes each time). I worked at a University and during the summer, Pilates was only offered once a week. My lung function gradually got better over the years and then over the summer my progress receded - my pulmonologist could tell and I didn't feel as well. Since I retired last May, I have joined a fitness club that offers Pilates 4 items a week - I really can notice the difference in how much better my lungs are doing because I am engaged in exercise that gets the 'junk' out of my lungs and builds up my lung stamina. But it was a gradual evolution over quite a few years-- I started very small, doing what I could do.
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2 ReactionsI am REALLY impressed with your 7.5 miles per outing! WOW! I was one of the original participant (still am involved in) the Women's Health Initiative that has charted women's health over the years .. am very proud of trying to help future generations. They now have a new research initiative "WHISH" that involves researching around the amount of exercise done versus health. I agreed to be a part of that also.
Seeing your post .. it is helping me MAYBE attempt to increase my activity! I have been doing Nordic Track (a cross country ski machine) for nearly 40 years .. stopping only for about 3 years when my back was so painful from the MAI/MAC coughing. Prior to stopping .. exercise was like brushing my teeth .. just part of my life. It was amazing how hard it was to get "back in the saddle"! SO easy to put it off and not prioritize it. So reading your post .. I am REALLY going to try to harder! If you can do 7.5 miles .. I can get my fanny in gear! Thanks for your post!
p.s. my husband uses a sleep machine .. he has had to try SEVERAL different masks to really get the right fit that will allow him to use the machine all night. If your current one doesn't feel quite right .. try another .. plus my husband has discovered they wear out .. need to be replaced periodically as the "fit" kind of gets poor. This did not happen however for many months.
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1 ReactionThe best thing that happened to me was switching to a medical university Shands in Gainesville who still treat me but referred me to National Jewish in Colorado. I live in Fl. My first visit was for 10 days where they run tests on you from early morning until 4 or 5 at night. At the end of all testing it was determined I would be a candidate for a left lingula lobectomy and later a r middle lobe. Both of these areas now had M abscessus and were damaged from the bronchiectasis. Neither was working they were actually dead tissue. One they were removed it removed most or all hopefully of the disease. The surgeon I had was Dr John Mitchel of the University of Colorado. He is a well know surgeon who specializes in VATS surgery which is less invasive.
National Jewish is the top know hospital for Mac.as well as oter lung issues. I flew there by myself to save money on airfare and hotel costs and the hotel had a van that took you back and forth for free. I know this seems expensive and alot to do but it is your health we are talking about.
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6 ReactionsHi @debbiet,
Have you seen the great group of people sharing about MAC on this Connect discussion thread? https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
Please click on the link and join in. All welcome.
Colleen
Connect Community Director
Hello Nick and Paula, Please tell me the name of your Pulmonologist from Central Florida I am in need of one I am presently being tested at National Jewish Health but I cant stay here indefinitely. My home is in Central Florida. I sure hope the best for all of you, as I truly understand the difficulties involved with this disease. I am quite weary and hold on to my faith to get me through all the unknowns and trials. Thank you for sharing.
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1 ReactionI am also in Central Fla and I go to University of Fla at shands in<br />
Gainesville. I had a Dr Fennelly who was excellent and specializes in MAC,<br />
he was the director of Nontuberculous Mycobacterial Disease program but he<br />
has moved on so now seeing another dr there who also seems quite good. has<br />
replaced him. Dr. Moguillansky . Their phone if you are interested is 352<br />
265 0139<br />
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1 ReactionThank you so much I will call today!<br />
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1 ReactionIn the Orange City/Lake Mary area (Volusia County/Seminole County), Dr. <br />
Karuna Ahuja.<br />
http://www.FLHeartLung.com<br />
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Hi Colleen. I am about to be undergo another round of sputum cultures in a 'unorthodox military setting' to see if I am still producing positive AFB compared to my last round of cultures which were performed in May 2015 (they were all positive). My most recent CT Scans (July 2015 without contrast) evidences 'tree in bud opacity/branching nodular densities in the superior segment right lower lobe' with no "new nodules" compared to the 2014 CT Scan which did NOT have tree-in-bud opacities, but did "redemonstrate biapical chronic lung changes" from 2011 CT Scan, "reticulonodular, interstitial, pleruparenchymal opacities in both lung apicies".
I am dealing with people down here who have no clue what MAC is and are too proud to admit that they have no idea how to identify or treat it. They only treated me with two antibiotics almost five months before taking me off of them. This was all after a TB misdiagnosis following a 21mm PPD in 2011, and treatment with Isoniazid for nearly 6 months, further building the resistance of the Mycobacterium avium to the proper treatment.
I have written my Congressman, Thomas Massie in Kentucky, for a review of my condition and to "Trust but Verify" the claims and treatment (the lack thereof) by the Army MEDCOM providers. To date, I have been able to secure a second opinion with an insurance authorization to have: ONE appointment with a Pulmonary Disease doctor and ONE appointment with an Infectious Disease doctor both at UNC in Chapel Hill.
Based on your experience, is there really anything that can be accomplished in ONE appointment for a MAC infection? What do I need to ask these doctors to do that the Army medical team is not doing?
The Army has provided me with Reports but NOT imaging of my most recent CT Scans, so that I can take them to the appointments. I will also take all blood work and sputum results with me to the appointments.
Thank you for any guidance you may be able to provide.
Very respectfully,
Melissa