(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!
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
@nick52 , Thank you, I will look into getting this test as I have trouble swallowing. I had my throat widened year before last and was told I may need it done annually. I can tell that it is time for that again because my food collects at the bottom of my throat and hurts. It is that same feeling that you get when you've swallowed a pill without enough water, and it sticks there and is painful.
@nick52, Hi Nicole! That is excellent advice. I have been trying to adhere to an alkaline diet myself. It is hard because my husband loves his meats and ice-cream; therefore those are always in the house. I can tell that my body's ph is too acidic; my tongue burns most of the time, along with other indicators. I use the acid test strips also. For those of you who do not know much about this, you can Google the subject and learn more. Some diseases are caused by, or become worse due a high acid diet. Some high acid ph in the body can be caused by the disease and also by medications.
I agree with the swallowing issue. Everytime I bring it up at my appointments, I am brushed off.
Jo Ann K
Dear Maggie and Windwalker
I was so privilege to be able to talk to the radiologist. He said to me nick52 that Dr Ubla radiologist that aspiration of the liquid is the cause of my bronchiestasis. Video déglutition X-ray is not recommended by doctor and wonder if they know it exist
lol. After viewing the video déglutition watch the video ASPHAGIA you will get a lot of information you won’t believe. I found my mucus problem. Related to aspiration and in my case it is the SILENT type. So that means you are not aware you have an aspiration
problem. I am telling you, you might find a lot of info about the symptoms you have. The problem is the bronchiestasis who is responsable for catching bacteria. I am meeting the specialist on Monday for my aspiration problem.
Jo Ann I know the feeling ! You got to I insist to have it done. Give him the guilt trip by asking him how he would feel if you get a bad pneumonia or have lung cancer . If you are aware of the cause you can be more more careful to protect your lungs.
Windwalker
You too have a burning tongue. Every time I eat ice cream or readmeat my tongue burns also. If you have an acid stomach it is dangerous to aspiration the acid reflux on your lung and have a lung disease. I also read that you can also have reflux on a
non acid stomach. Google Dysphagia . You will find all kind of info also exercises to do if you do aspiration. Only one more month and i will be in Florida.
Dear Windwalker
The pill feeling affect is call globus throat check this on google
Apparently I was tested a few years ago, and that was OK. We talked through what some of my symptons should be if this was a problem, and I opted not to do it. (sadly, tired of tests..) He has no issue ordering the test, and after reading Nick's words, I might call and ask for it. This was my GP, who originally sent me to the hospital. I'm his first patient with MAI... I feel like I have a team though, so I'll also talk to my IFD & my pulmonary Dr about the test. Pneumonia is gone, I'm feeling better and exercising again. Was taking cefpodoxime and am glad to be off of that!
Then you need to find another doctor...
Dear Maggie,
It is a very simple test. Not complicated at all. Ask the orthophoniste when she will talk to you with a questionnaire before the test. Ask her if the radiologist will assist during the test if she says no insist to have him there. There is radiation
in the X-ray but it is worth the test. I had an NAET treatment this Friday and radiation was an issue that I had treated. I had real good result with it since July so I now believe in it. I wish we could all meet together. We all have our experience and
we could help each other. Write video déglutition video on google. I will check if I can post it on this group conversation.