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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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@boomerexpert
Awesome. Tdrell
@chinasmom , All good advice Becky. I would like to also add that when you go to rinse the equipment being soaked in the vinegar solution; that you do not rinse in tap water or you risk reinfecting it with mac. Can rinse with tap water that has been boiled 10 mins then cooled.
@maggie56 , Hello Maggie and welcome to our group. When you go to reply, are you first starting with the @__________ at the beginning of your reply? Do you see how I did it with this reply? By putting in that person's @name, it sends the reply directly to them and connects it to the conversation. Many of us had trouble with the replying process when we first started.
@colleenyoung , I think the problem was @maggie56 is that she wasn't directing her replies by using the @name of the person she was replying to. I did suggest she try that.
@boomerexpert, I am feeling and doing amazingly good. Have not coughed in a year. Still lack energy though. I think I will try a strict adherence to the use of probiotics and see if that doesn't improve things.
@sophie1019 , Sophie, it would be a good idea to request ALL hard copies of your sputem lab results and keep a folder just for them. That way, you always know exactly what bacterium you have and can research it, or give info to new doctors. It also will keep track of what antibiotics work on your particular bacterium. Many of the hard copies contain the suseptability test results as well. The organisms that cause you infection can change, for example: I caught pseudomonas while on cipro and doxycycline for three years. My antibiotic was changed to specifically treat the pseudomonas. As years go by with chronic illness, it can be hard to remember what infection you had in which year; and if you change doctors, this info will be very handy. I am a little concerned that you know little of what is actually inside your lungs. The questions to ask your doctor is, What specie of mycobacterium is it, and what is the colony size. If they cannot answer these two questions, then the labs they are using are not testing the samples very thoroughly. Sometimes you have to demand that the lab test your samples 'all of the way', they can do it, but many take the shortcut.
@jkiemen , So true Jo Ann. Just about all of our posting members that live in Wisconsin are located in the southeastern part of the state. Wis is probably the worst one of the 'hot pocket' states. The other states are: New Hampshire, Hawaii, California, and Florida. I wonder what makes them the 'hot spots'? I am thinking it is the water sources, could it be that they have reservoir supplied water?
That is very interesting because we lived in Berlin, New Hampshire from 1971 to 1986. The water had giardia (which I got). We were told the filtration plant couldn’t filter that parasite. With that said I wonder if the filtration plants in certain states are better at “filtering” some species of bibbits 🙂 than others. Not everyone in my family got giardiasis even though we all drank the same water. That makes me think of the genetic susceptibility factor for certain diseases. We also lived at “chimney level” which was very bad for anyone living there.
I wonder if cities do any testing of the water. Makes me all the more likely to keep getting it if I get improvement with the big 3
Or there is more Health Care Specialist in SE Wisconsin and Madison. So I wonder is it because more people are being tested in those area's.