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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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Megan it would probably be advisable to be treated at some point for the MAC. If you do not get treated your lungs will continue to be scarred which potentially will cause more problems. It will not go away on its own. Ask your doctor for an in depth explanation. He should be showing you your scans and teaching you from them. If he is not willing to do that you might consider finding another infectious disease physician.
Go to National Jewish video's that you can access via this website. Listen to the dr's talk about MAC. Got all the info I needed from listening to them.
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1 ReactionDear All, I apologize for not connecting with you sooner but I have been very ill. I was diagnosed with Pseudomonas Aeruginosa, Klebsiella and Serratia bacterias. I have essentially been sleeping or with whatever small energy reserves I have had .. dealing with the red tape of insurance and Mayo Clinic. It has been hell on wheels to be honest .. really a horrible experience for a sick person to have to go through. I FINALLY have an appointment on Wednesday for a test dose of Tobramycin at Mayo Clinic Rochester MN after my local doctor (nicely .. positive it is due to fear of malpractice) refused to do the test dose. The 28 days of Cipro 2x per day failed to help me so the next step is the Tobramycin. Please forgive my absence and know that I will be back on Connect as my health allows .. but it just hit me like a ton of bricks and sleep is all my body wanted. Please take care of each other until I am back .. and watch for newcomers .. you know what it was like. Hugs to all! Katherine
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2 ReactionsGosh Katherine - that's just awful. Sometimes He gives us more than we can bear. You already have your dear husband to watch over and advocate for! My heart breaks for you. I will keep you close in thought and prayer.
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1 ReactionI'm so, so sorry to hear that you are sick. You are suffering so much and you are still thinking about the rest of us. I will keep you in my thoughts and wish you speedy recovery.
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1 ReactionFeel terrible that you have been ill and then having to deal with insurance and Mayo. Nothing like red tape to calm you down and make your day...NOT! I hope the new medicine helps. Get plenty of rest and don't worry about anything! Nothing is as important as your health. Take care. Fondly, Mary Jo
Oh Katherine....I am so sorry to hear you are so ill. Prayers for you to have a speedy recovery. I've been wanting to write and ask all of you if any of you have experienced bleeding as a symptom. In to last 10 years I've had it happen 3 times. The last time was the worst. It was 5am, I was sleeping comfortably. I rolled over and realized I had some congestion in my throat. I tried to clear my throat and realized I had a mouth full of liquid. I got up, grabbed a kleenex to spit in and it was bright red blood. I soaked a least 4 kleenex with blood. I did not cough this up, I just happened. I did make myself cough and clear my throat to get all the blood up. In subsided as quickly as it started. Very scary!Has this ever happened to any of you? It seems to me that if that much blood was coming from my lungs I would have been in severe distress. Very puzzling to me and my Drs. I having a sputum test and a ct-scan tomorrow. Going to Mayo Clinic in Rochester to see my pulmonary Dr., May 8th. By the way I was diagnosed with bronchiectasis and mycobacterium abscessus in November 2016I'm anxious to hear from anyone who has had this happen to them.Thanks All,Lisa @ tutti
@tutti Yes, it's happened to me twice since 2014. The first time it happened, I had just played tennis outside for an hour and did not have any discomfort whatsoever. So it was totally out of the blue. I also felt something coming up my throat after dinner. When I spit it out, it was bright red. I always described it as coughing up blood. But it was actually the blood that came up to my throat that made me cough, not the other way around. Then it got worse with more and more blood. So I spent the night at the ER and had blood coming up and spitting out all night. The blood soaked Kleenex filled half of a small trash basket. I was scared out of my mind. Then it stopped as suddenly as it started the following day. I did not take any medication and it did not happen again until last month when I had a cold and a lot of mucus. I started having small blood clots in my sputum for several days. But the amount was much smaller. This time the pulmonary specialist prescribed 10-days worth of antibiotics. No other meds were given. I have been diagnosed with brochiectasis and MAC. But I'm currently not taking any long-term medication for them.
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1 Reaction@katherine, im sorry to hear you are so sick. Please rest.easy knowing we are all thinking, and praying for you. Dont come back too sooon. We need you but we can wait until you are all better. With mucho love, Judy w
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1 ReactionYes, I have coughed up blood. When it happened, I was put on Avelox for 10 days. Pulmonologist said that it is always best to go to an ER, if you need to go to an ER, that has an interventional radiologist in case you need medical assistance to stop it. Hope this is helpful and comforting to know that that symptom is not extraordinary nor does it signify anything that is terrible. Terry
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