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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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@pfists .. Shari That is just great! Would you ALSO pass by him the NAC .. that would give our Group ... TWO different options since each of our bodies react differently! Hugs! Katherine
@128128terry11t, Terry, Mystery SOLVED!! And guess who was smart enough to solve it? Colleen! Thank you Colleen!
Your post:
Can't seem to find the post now. It was said in the context of getting an IFD to help her arrive at an appropriate schedule of when to take antibiotics relative to other meds and multivitamins. Love to connect with one!Terry
Ooooop the guilty party was ME!! I must have been typing too fast! Didn't have a clue it was me! It was part of one of my posts to you! I typed too quickly! Should have been ID doctor .. Infectious Disease Doctor!! So sorry for the confusion .. that I myself caused!
Hugs to all! Katherine
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1 ReactionWhat a special ID doctor to take the time to do that. This is a good business for someone who is knowledgeable about drugs. They would make a fortunate. Just imagine googling drug interaction and noting that a person works with you individually to make sure that your meds are not interacting poorly with one another and how best to take them. I'd sign up! Thanks for clearing up this mystery.Terry
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2 ReactionsHello Katherine - thanks so much for getting back to me. Here is my question: have you or anyone out there had any experience with dealing with the affects of high altitude while dealing with MAC and bronchiestisis (I have both)? The reason I ask is that just in the last year, since I began treatment, on my trips to Sun Valley, Idaho ( which is at about 6,000 feet) I get what is called "nocturnal asthma". I have travelled there many times in my past but now it seems the high altitude is affecting my breathing. I wake up in the middle of the night and panic because I feel I am not getting enough air. Once I use my inhaler and sit up I can regain my ability to breathe, but for about 15 minutes it is very frightening. It only happens at night, after I have gone to sleep, though it also happens if I move too quickly... My daughter and son-in-law and my 3 grandchildren live there so I have good reason to want to be able to visit, but I am now reticent to travel there due to this problem. Clearly it is the altitude, as this has never happened to me anywhere else, and not where I live ( I live near Boston which is at sea level and I am fine at night. I just wonder if anyone in our group has had to deal with this, and if so, what they have done to counteract the symptoms. If anyone does have something to say about this, please do let me know! Many thanks, Pamela
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1 Reaction@pamelasc1 Hello Pamela, I hope others will jump in because my ONLY experience is that when I asked Dr. Aksamit that with MY particular level of MAC and Bronchiectasis .. did he see any problem with me traveling to Machu Picchu because my son and family had just been there and were excited for me to go. They went up to close to 17,000 ft! Dr. Aksamit said for me NOT to go past 5,000. I asked him if it was health and/or age of 73. He said both but it would not be good for my lungs. That is my only experience. Hope others will share theirs!
This must have been so scary .. wonder if the 6,000 is similar to what I was told? Be sure to check with your doctor who knows your whole history. Hugs! Katherine
Hi, Pamela, I have bronchiectasis, MAC and atypical cystic fibrosis. My CF doc told me that if I went into a higher altitude, to be sure I could get back without any problem. I live in Phoenix, AZ (1,000 ft) and it's popular to head up to the mountains in the warmer weather. Since being diagnosed, I have been up to about 4500 ft elevation but was only there for a short period of time before coming back. I was just visiting a friend so hadn't planned on staying long. I doubt that I will attempt to go higher than that as I expect it would stress my already scarred and weary lungs. I do remember a few years back, before I was diagnosed with any of this, I was in New Mexico and got very short of breath just walking along flat ground. That was about 8,000 ft elevation. Now, if I'm planning on going anywhere, I always check to see what the elevation is. Linda
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1 Reaction@lindam272, Linda, thanks a lot for jumping in .. good advice and help! Really ties in with what Dr. Aksamit told me. Might really help Pamela .. hope so. Hugs to all! Katherine
Hi KWilbur, im new to the Mayo onlibn site and am also already feeling welconed and less panicked like you.
Sorry you are having to deal with this too. I have a left upper lobe cavitary lesion 2cm and my thoracic surgeon says if it doesnt decrease he wants surgical biopsy. I had a bronchial one but they couldnt get enough sample, its likely candida and bacteria. I sure hope yours gets smaller too. I know its hard waiting. My next stufy is in spring. Is your body feeling weak too? My best regards, Julie
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1 ReactionDear Katherine, Linda, etc. - thanks so much for getting back to me about the affects and problems with altitude... I have also been checking out the videos on breathing techniques and just learning how to open the chest for better breathing practice. Though it is very hard to accept that altitude does in fact have a strong impact on my breathing, I now have to get my mind around this reality. Thanks so much again to all of you, Pamela
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1 Reaction@jewel8888 .. Julie Hello Julie, so glad you found our Forum! It sounds like you are really going through a tough time! A lot to go through! I wanted to let you know that KWilbur, Kathryn may not respond to you .. she temporarily went off our Forum due to some demands in her personal life. She and all of us must put our health/energy level first and foremost .. she is doing what is right for her at this time. I am hoping some of our community will jump in who also have some of your issues .. share hints and ideas!
I would suggest as you have time that you read through the past pages of the Forum .. you will see that EACH of us has had a different journey through the treatment and disease .. BUT we are coming .. or HAVE come out on the other side. Please do keep coming back .. you will find really kind supportive people here who will support you through this journey.Sending you both a Big Hug in this tough time. Katherine