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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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I am glad that you are feeli g better. I was diagmosed with MAC this month and on three antibiotics. I had diarrhea at the beginning, it has subsided. Do you know of anyone who had eye or hearing problems. I take the colorblindness test every other day. That part of my eyes are still good. Look like things are blurry, but it could be my mind playing tricks on me. I am trying to stay positive....
Then I believe you haven't found a particularly good pulmo... In contrast, two pulmonologists wanted to do a bronch on me immediately as that's the most accurate way to determine the presence of MAC/MAI...sputum tests can be misleading... Recommend you find a new doc...
My pulmonary dr. wanted to do a bronchoscopy on me first thing after ct<br>scan to be sure of what was going on in there.<br><br>
I did the bronchi test. I have the top pulmonary specialist in Wisconsin. He has run every test, completed every lab test imaginable. I also got a second opinion from another top pulmonary doctor who was in agreement with my doc. I feel really good, do not have any side effects right now. I was told by the 2ND doc that if side effects are going to show, they will mostly show in the 1st 30 days...<br><br><br>
Hello Sophie, I have been taking the three meds for MAC for a month now and I haven't seen any eye Dr. I have Dr. appointment next month to check my eyes. I noticed my eyes are itchy all the time. I don't know its b/c I don't get enough sleep or from the side effect of the meds. Also, my ears I can hear some noise. I get a lot of stomach cramps on and off. Try to drink plenty of water after you took the meds. Take care off yourself and let us know if we can help.
Thanks for your response. I notice that of I take the meds one at a time, maybe 10 to 15 minutes apart ( per doctor's order)<br>with a piece of dry toast, I have no stomach issues at all. Maybe that will help. I also have an eye doctor's appointment on july 21 to get my eyes checked. I was also told to download a colorblindness app on my phone to keep my colorblindness in check. I have only been on the meds for approximately 3 weeks, got a long way to go.<br>
Let's keep in touch since we started taking the meds around the same time, let's keep encouraging each other, cause I don't know about you but I'm supose to be on the meds for one year....quite a journey...<br><br><br><br>
Sophie, do feel hot at night? I noticed since I started the meds I hot all the time especially at night. I take my one meds at 11AM the the two at 1:20PM after I eat lunch. I need to find out about the ear. Do you know if you go to your Primary care Dr. or to the ENT Dr.? Thanks for help
I am not hot at night as i always stay cold but this started even before i knew i had mac. I would check with my primary and if you need further testing, the doctor would probably recommend a ent for you.
I was diagnosed with MAC in May of 2015. From reading other posts, I did not have the same symptoms as others did. I had been feeling really bad for several months. Coughing was not a problem, although my husband said I coughed a great deal during the night. I was having night sweats and they were increasing and would wake up with headache around sinus area. Finally went to Dr. Since nothing else contributory he treated me for sinus infection.. Returned next week or two when that did not help. Did sinus x-rays. Negative. One week later began running fever and feeling worse. Went back to doctor and white count elevated. To determine cause of elevated white count did chest x-Ray was done showing an apple sized area of infection. Sent to hospital for IV antibiotics. Referred to pulmonologist. TB ruled out after week in isolation. No resolution from IV antibiotic after 10 days. PICC line put in and sent home to continue IV therapy. Oxygen used around the clock. Saw doctor for the next 6 weeks with no improvement. On the last day I saw this particular Doctor he accidentally saw the culture report from when I was in the hospital and mentioned it too me. I don't know why but he did not start MAC treatment. I googled MAC and when i I saw the recommended treatment and knew that I had not been on any of the recommended meds, I saw my primary dr and requested he may new referral. MAC treatment was started and the first month there was remarkably improvement on chest x-Ray which continued for several months. Negative sputum for MAC after 3 months. My chest x-Ray will always have scarring. I have been on the 3 antibiotics now for 13 months everyday. Soon to end. I have not felt that great, but I have not felt as bad as I was afraid I might. I just keep going and try to make the best of it. After about 6 months I was able to get off the oxygen and resumed an almost normal life. I just pace myself and am grateful that this disease is curable. I hope this will encourage someone else. Do the treatment. I failed to mention that I lost a lot of weight as I had no appetite at the beginning. Appetite returned somewhat and have regained a little weight. During all of this, 4 days out of the hospital, my husband passed away unexpectedly. It's been a hard year and a half. Expecting better times soon.