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:
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!
KateMN
I cannot take credit for posting the videos which were shared by tdrell. I was referred to Dr McShane by another outstanding pulmonologist at the U of Chicago when my sputum sample came back positive for MAC. Yes, I am very lucky to have her for my physician. In addition to her doctoring, she is so optimistic that I told her that I was going to record her if she called again. She had called to reassure me with respect to a scary fungus (mucor) which showed up in a sputum sample. We have a great rapport and I think people can see from her video that appointments with her are not only productive but fun.
Liked by Terri Martin., Volunteer Mentor
@windwalker ….was not sure how to list the link to the 2019 NJH workshop videos….so that members would see….if you are able to…would appreciate …my tech skills are atrocious. take care…be well…thanks….terri @tdrell
Hi Brenda, it showed up last June and I"m not deathly ill either! Dr McShane told me that it was her job to worry, not mine and she wasn't worried about it. However, she did have me undergo a bronchoscopy with biopsies of a suspicious area but they didn't find it. They did find asperigullis (sp) but it didn't grow. A fungus shows up in my samples but never mucor again. She told me that it is very common to have some fungus.
Liked by Terri Martin., Volunteer Mentor, anniepie
@rits yes I have had aspergillus show up as well. I’ve never had a bronchoscopy
Liked by Terri Martin., Volunteer Mentor, rits
@sounder27 Have you ever been put on Singulair for the allergies? It was a life changer for me. When my Mac was active; I was super sensitive to all smells too.
Liked by janovr
@tdrell Hi Terri. The link you posted for the videos worked just fine. I enjoyed watching them and I am sure others found them useful. After I watched the 'Nutrition' one, I sat down and ate two bowls of cereal, and then two bowls of chili at lunch. Ah, the power of suggestion. I hope you are doing well. Hugs!
Liked by anniepie
@rits I actually enjoyed my appointments with Dr. Leventhal at Mayo Clinic, but unfortunately for me; he retired this past August. The Dr. that has replaced him seems to be very invested in this mac disease. I have not met her yet, but I did read her bio and some of her published articles she has written about her observations in treating NTM. I will meet her next June.
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@windwalker
@rits Hi. Thank you for posting the video with Dr. Pamela McShane; you are so lucky to have her as your physician. I found the video interesting and easy to follow.
Liked by rits