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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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I think that is what they are hoping to find with the bronchcospy. They did a fluid sample, brushings and a small biopsy.<br><br><br>
No inhalers. My tounge is forward, imo, but it's been this way as long as I can remember. I had speech classes in elementary school because I couldn't pronounce s's and z's correctly. But who knows the coughing could have something to do with it. I haven't been coughing much lately but when I do I tend to put my toung behind my lower teeth so as not to rub sore spots on the bottom/sides of my tounge when sticking it out of my nouth and coughing.<br><br><br>
Hello cowboy .. good to hear from you! WOW! What a mess .. one fix messes up another fix! It is so hard to decide what to do in situations like yours .. the human body is so complicated .. AND surgeries get better as the years go by .. but look what happened to you!
After a severe bout of pneumonia in 2003 and a lot of meds .. I developed GERDS. I have been on Aciphex ever since. That is a LONG time .. hence I have been told that after 3 years on a PPI which Aciphex and Nexium are .. I should have my Vitamin B12 tested as needed .. as well as take magnesium supplements. You might check with your doctor and see what they say about your particular case.
Sure hope your regimen works for you .. sounds like you have been through the wringer! Thanks for checking in .. glad to hear from you! Hugs to you! Katherine
Jill, that is a GOOD point! I know that I see "Fungal Culture-Routine" on my reports .. so that is something to think about. Thanks for pointing that out! Katherine
Hmmm, Jill, that is interesting about the tongue behind the lower teeth! I developed "geographic tongue" AND Oral Thrush from all the antibiotics (despite my religious use of probiotics!) .. that I just can't get rid of despite two rounds of prescription Oral Thrush medications.
So my tongue does get painful .. I am going to try to use your method! May be trying to teach an old dog new tricks because I have been coughing so long this way .. but boy I am sure going to try it to save my poor tongue! Thanks for the idea! Hugs! Katherine
welcome back Katherine, glad you had a good trip.
Thank you Heather .. BUT how are YOU doing?? Hope it is ok? Let me know! Hugs! Katherine
Hi @katemn. I'm glad to hear that you had a good trip. Sorry to hear, though, that you cough caused a disturbance, what a nuisance! Everything is progressing in my life. As you may remember I had a heart cath in August. Everything looked good, except for the aortic valve which is leaking "like crazy" (not the technical term, but my interpretation). It has resulted in a DX of heart failure (not congestive, thankfully). I've met with one group of doctors who have told me my only option is open heart surgery (cutting through the sternum, etc.) it of course has a long recovery and of course a lot of pain. While there are cath procedures for replacing aortic valves (usually for aortic stenosis), my valve problem is not a candidate for that procedure (I don't have stenosis). I'm getting a second opinion at U of Michigan in mid-October and I'll make a decision after that. It will be good to have this behind me and while I would like to just "get it over with" I know that picking the right surgeon and the right hospital system are also important. Well, that is my story. Good to have you back! Teresa
Hi Katherine! So happy you had a nice holiday and glad you are back raring to go! I'm still on the watch. My infectious disease dr from Cleveland was ready to start me on meds cause my ctscan had some changes but after she consulted with my pulmonary dr from Mayo Mn It was decided to check again in Dec. I have a ct scheduled for Dec.and also hope to make a trip to my Mayo Dr. for advise. I'm feeling great, still no symptoms and exercising on days I don't work. I do have a question, I no longer use the shower, is this recommended?
Staying happy and well,
Lisa....@tutti
Hi Kate, Glad you had a good holiday. I've been fine. I have a question for you and everyone else. The first Dr. I saw told me my MAC wasn't contagious. I told him I was particularly concerned about being around a friend and an uncle that had cancer. He said no problem, not contagious. Well, I switched Dr's about a month ago and she had a write-up that she had done - kind of a Bronch/MAC 101. In it, she said that MAC wasn't contagious unless the person was undergoing chemo. Well, both my friend and my uncle were. And I visited my Uncle last spring on a trip to MN and actually went to his chemo treatment with him based on the Dr assuring me that I was NOT contagious. He was so emphatic about it. What have the rest of you been told about this? Are we contagious in some situations? Which Dr. was right?? I feel really terrible about this. Janet