(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!
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 ..
– 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!
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
@xfirerose, Here is a link that I found on NIH. https://ghr.nlm.nih.gov/condition/common-variable-immune-deficiency#inheritance
@xfirerose, Hi. I read up about CVID. Gosh girl, that is a rough thing to have. I would imagine having to go in for your three week dose of immunoglobins is a pain in the neck, but thank goodness you have it. I was reading about the freaky genetics of it. That it can be a hit or miss thing genetically, and sometimes have the gene but no symptoms or illness. Sounds pretty fickle to me. Are you able to also be on maintenance antibiotics to keep the lung infections (mac & pseudo) at bay?
@xfirerose, Hi. I had asked you in another post if you could take antibiotics since you were also on the immunoglobin therapy. I never took the 'Big 3', my Mayo dr put me on monthly antibiotics. For 10 days one month, I'd take ciprofloxacin, then on alternating months, I'd take doxycycline for ten days. A yr later I tested negative for mac, but stayed on those two meds for two more yrs to keep the mac away. That was in 2013. I test negative to this day.(I was severely ill) Perhaps you can tell my story to your doctor and be sure to tell him\her that this treatment plan came from a Mayo pulmonologist. I want you to mention that because Mayo physicians are highly respected. They are the cream of the crop in medicine. Without knowing your susceptibility test results to treat mac, my exact two antibiotics may not work for you, but perhaps another pair would. The meds are given alternately to prevent resistance.. One more thing, your dr can call your insurance company and/or Medicare and tell them that they need to make an exception for you to go to Mayo due to you having a rare disease. Sometimes, they can get that through. @alleycatkate was able to flip hers and got into the Mayo. Please keep me posted on what they decide for you
Good morning all, My husband just had a sputum test and once again the results are pseudomonous aeruginosa. This time it is +3. Does anyone know the difference between +1, +2 and +3 pseudomonous? My husband also has MAC but is currently not taking anything because the big 3 caused him to lose quite a bit of weight and get very run down. We see the Infectious Disease and the Pulmonologist doctors next week.
Hey goood morning guys, I hope everyone had a great thanksgiving. I’m so sorry to ask for help but I am so sick. I have a sore throat for more than a week now and I have tried anything that I read and heard. But I don’t know what do do. I cannot eat now and when I drink it hurts like really bad. I have Sjogrens and that caused a of dryness in my mouth and throat and only one vocal cord works. It’s bees a really rough week and I don’t know how to stop this. It causes my ears and head to also hurt. I am on Tobramycin and the nurse keeps telling me don’t stop but what do I do? Anyone any suggestions please help!!! I really appreciate it. Thanks Rita
hi America. have you been to your family Dr. To get your throats checked to make sure you don't have something else or strep.
I have been to my family yesterday but this has been more than a week now. Oh my gosh I hope it’s not. I have an appointment tomorrow morning with my primary care doctor. Thank you for your quick response. Rita
@america Maybe it is Thrush from the antibiotic. You may need a oral Nystatin Swish and Swallow or Mycelex troche. You should get checked. Maybe even Urgent Care.
Thanks so much! I’m on the way to the urgent care. I have an appointment tomorrow but I can’t wait. Thanks so much Rita
@heathert ….. in addition to a sore throat and loss of voice for s few days on the Arikace trial did you have any other side effects? My upper airways are irritated and feel raw almost like I have sharp razor blades in my lungs. I’ve been on Ariksyce now for 2 weeks. Also did you use a bronchial dialator and nebuluzr saline before each application? Thanks so much… since this drug is so new Doctors don’t have much advice or direction.