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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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Katherine, I just posted a long winded reply to Kay regarding my journey with MAC. Have to agree with you, Due Diligence and recognizing the signals your body sends you is vital. Thank you for all your support and good information.
Suzie, quite interesting your reaction to Levofloxacin 750 MG . I saw my Internist today requesting a travel prescription for Levofloxacin 500 MG -1 per day for 10 days. This is the 2nd time I have requested .. gotten the same lecture about her recently receiving BIG warnings from the FDA .. SEE http://www.fda.gov/Drugs/DrugSafety/ucm500143.htm
My problem is that nearly all other antibiotics other than Cipro trigger terrible 48 hour migraines .. and I just got VERY ill on a trip with either pneumonia or bronchitis .. and am now planning another trip .. thus was requesting this travel prescription.
So your note above is right on with the FDA warnings. I just read the website .. will make me VERY careful on my trip to only use if absolutely necessary!! Best to all! Katherine
This is amazing. I have been alone since last June knowing somewhat what was ahead of me. It means a lot to have found a support group and source of information. Of course, I am still hoping that this will go away on its own - one c-scan at a time.... Thank you from my heart.
I have tried to give a sputum sample but I live in the country over an hour away from a lab and, so far, have not been successful. The pathologist's report and the nodules I can see on the scan, plus my doctor are all the information I have had so far. You have given me good questions to ask my doctor and I must do that sputum exam if it means standing on my head in his office! I am so tired now , I can't imagine having less active time. But thank you and wish me luck as I start the year. Very best, Kathryn
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1 ReactionKathryn, the way it done for me is : Mayo Clinic in Rochester MN sends me a sputum sample cup .. an ice pack that I put in the freezer overnight .. a Styrofoam mailing box that is divided in two .. one for the sputum sample .. one for the ice pack .. a mailing label. I use my inhaler in the morning when I am most able to produce sputum. Place the sputum in the cup with the ice pack .. put the mailing label on the mailing box .. take it to FedEx .. it get overnight to Mayo Clinic lab .. and it is DONE!! Discuss this with your doctor .. how my doctor does it. Surely a lab can do this for you! I live 2 hours away from my doctor and they got it set up for me when I was living at my winter home even!! Where there is a will there is a way .. FIGHT for your health girl! Hugs! Katherine
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2 ReactionsThere is always a solution isn't there? My best time is afternoon when I really have to clear my lungs. I will try.
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2 ReactionsKathryn,
Another option for getting a sputum sample is a bronchoscopy. I never cough up enough so that's what I had done after my CT scan. I've read other posts of people that say they also can't cough up enough so they too have to go that route. I agree with Katherine - not from experience but I've read an incredible amount and read a lot of posts on this site and another and I've never heard of a Dr. telling someone they absolutely won't be able to work. Listen to Katherine - yes, life will change. But, with support you will and can deal with it. It is frightening at first until you do your research. Knowledge really is power. Makes you feel more in control of the situation.
As an aside, I was unfamiliar with the lung cleansing you mentioned. Can anyone else explain that one to me? That's not something I'd ever heard of. Best of luck, Janet
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1 ReactionJanet
My MAC was found by bronchoscopy also, as I cannot produce sputum, so maybe we can't cough anything up to clear out lungs. I have a lot of pflegm in my throat, but the MAC is deep in my lung in a cavity in the upper right lobe.
My Mayo Clinc doc did tell me that not having a productive cough does not mean anything bad or good. It does not mean the MAC will grow faster, but it might be more comfortable to relieve the mucous she said. I found that somewhat comforting. I know people are always talking about clearing here, so maybe that's only accurate in some cases.
What were you told?
Thanks
Kay
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1 ReactionJanet and Kathryn, I agree .. this "lung cleansing" thing .. never heard or read a thing about it .. ever! Anyone else chime in? Katherine
Kay,
I too had trouble producing a sample but it seems that once the infection clears a bit, your body figures out what it needs to do and it becomes easier to clear your lungs. After 6 yrs, I feel what I have left is the effects of broncheitasis (contracted from the MAC). My samples from the MAC have been negative for 2 yrs .
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