(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.
Hi. Thank you for your advice. I have trouble in the past with taking meds and that is one reason why I am so scared. I wonder if I will be able to take care of my parents and my son who is handicap. I am so scared that I find myself crying all the time. I will find out Tuesday more info when I go to this doctor.Thanks again. Good luck!Cheri
Hi group, I can relate about how scary this is. I am thankful I am in the best hands at the Mayo. My mom was diagonosed with this over 20 years ago and the dr said the antiobotic treatment would be harder on her than the disease. They choose to monitor her and she never went on treatment. She is 90 years old and doing great. Everybody is different and I think the answer is to monitor it and stay on top of it if treatment is warranted. I go back to the Mayo in June to see Dr Akinsatt and have a CT scan, sputum sample and pulmonary function test. We will go from there. If we do decide treatment I have met with a pharmacy dr there that was very thorough about the drugs. 3 days a week, 3 different antibotics.
I think depression has played a part in this so we are monitoring that also.
Hang in there everyone. So glad we have this forum for support.
Barbjh, this was SUCH good information for Cheri! Thank you for it! Hopefully Cheri is with a GOOD pulmonary doctor who is capable of properly monitoring her. If it was Dr. Aksamit I wouldn’t have ANY concern .. he puts it all together like a great big puzzle to decide when/if it is absolutely necessary to go on the antibiotics .. AND what mix is the best for you particular situation. He is the best! The Pharmacists at Mayo Clinic, Rochester are also excellent. I also have other meds I must take .. she along with my local Pharmacist helped me put together a daily SCHEDULE of when to take the various meds and probiotics! It was a LONG list! With food .. without food .. so many hours before vitamins .. so many hours after another medication .. it took a bit to get used to! I printed it out and taped to my medicine cabinet .. a copy in my purse .. a copy for when I traveled .. BUT it worked for 30 months .. never got severe nausea .. never got yeast infection .. worked through things and came out on the other side smiling!
Your advice was so good .. again .. thank you!
Cheri, keep your chin up .. the beginning of this journey is a scary one .. but trust it will get better. Figure out what “fills your cup” and DO IT!! Remember you CANNOT pour from an empty cup .. and you CANNOT give to your parents and your son when you are empty! Figure out even little ways you can fill that cup .. ways that work for you .. not anyone else .. just you. If it is a bubble bath .. a cup of coffee early in the morning before anyone else wakes up .. a book of positive thoughts read each day .. finding a local support group of caregivers that you can attend .. there are also those type online support groups (just make sure you RUN AWAY FAST .. if you find they are the “pity party” type .. you are looking for an upbeat positive supportive one!) .. calling an upbeat positive friend .. watching a funny movie with your family and LAUGH together .. laughter is GREAT medicine! .. I’m tired so can’t think of any more .. but put your thinking cap on and take good care of yourself on this shared journey! We are here right with you .. sending you hugs!
For those newly diagnosed or others just plain scared about going on the meds, just remember two things: (1) without these meds, many of us would be in extremely serious trouble, and (2) if you find the meds making you so ill, you can always go off them — or perhaps there is an anti-nausea med you can take with them. Hang in there . . . it does get better!! But you DO need to take care of yourself. Sleep and exercise (to get your lungs working better) are critical. Even a brisk 20 minute walk every day will help. Much good advice on this site. Glad we’re here to help each other.
Hi, I was diagnosed with MAIC, about 5 years ago, and been holding off on antibiotics.(Had a lung Carcinoid tumour in left lower lobe and had a Lung lobectomy then at age 52, never smoked, I am 65 now and have multiple nodules in lungs, probably maic nodules, but being followed by Oncology for return of Carcinoid as well) I see my Respirologist every 3 or 4 months, have a chest xray at that time, and from the results of that X-ray we have the discussion to treat or to wait. Meanwhile, I try to keep active, with walking and a bit of cycling, although I have nasty arthritis and it gets tuff at times. Sometimes when the weather is clear and the air is fresh, my lungs feel pretty clear, but as the air pressure and humidity changes, I get worse, my lungs get tight and I produce alot of mucous, mostly thick pure white, with occasional nasty looking stuff. I go to massage and she does percussions on my chest, I have a vibrating belt I use occasionally, use Ventolin puffer 2 -3 times a day, and Cortisone puffer(Alvesco) once a day. But the best thing is exercise. I felt my best this past winter, when I would go up to the ski hill and walk in the clear fresh air up there. I would like to be like this other gals 90 yr old mother, who has had Maic all these years and never went on the antibiotics, because like you, I am so frightened of all the side effects.
Stay positive and somehow try to adapt to this nasty diagnosis. I was in shock, when I was told I had MAIC, in my lungs(I have what!!)
What 5 antibiotics are you on? For 1 year I was on 3 meds, didn’t help,
following year put on ,clarithromyacin, ehtambutol and rifabutin. That
didn’t do it. Other problems are surfacing and so I was taken off those 3
meds for now. My skin is bronze in color, everyone thinks I am “tanning”!
We have to figure what is causing that. Also have extremely dry flaky
skin and am tired and having difficulty gaining weight.
I have the bronchietatsis too. My problem, I don’t walk due to problem
feet. Wish you well.
Katherine, that was very good information about the Mayo Pharmacy as I
didn’t know they would do that for you. I just was baffled because as you
said, some with food, without, can’t take this or that vitamin or probiotic
with the meds, and wait so long between. I was despondent trying to make
my own schedule. Good to read that! Thanks
With the 3 big meds as you refer to them, have you tried taking 2 early
morning, 1 an hour later, 2 at noon and 1 in the evening? I never got sick
from doing it that way.
Forgot to mention, I was supposed to take 2 of the R. pill at one time, 2
of the C. pill only at 2 different times, 1 early morning an hour after I
took the 2 R pills and the last one in the evening, and 2 of the E pill at
noon. It was the recommended dosage to take for this MAC. It is very