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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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@suzie2017 That does sound delishious. I love avocado, had some with my dinner tonight myself. It sounds loaded with calories too. Nicely done!
@flib, Oh, I am so glad that the ginsing is helping. I have used it for about 15 yrs now. Did you find it in an Asian market? I have to tell you though, there may be days where NOTHING gets you off the couch, not even ginsing. At least I get days like that. I don't even fight days like that anymore. I just go with it and say "Hey, I am going to enjoy this downtime, relax, watch tv, nap...." If you knew me, you'de know that that is usually hard for me. I have never been one to sit around or watch much tv. Since you are 81, and active; I have a feeling that you are the same way.
@flib I did go to the yoga class today. The first half was chi quong, the second half was yoga with a gong infused meditation. I felt great afterwards! Are you famiiar with chi quong?
@suzie2017 I know, COPD is aweful. My mom had it and she smoked up until one week before she died. She was 58 yrs old. She suffered horribly for 7 yrs prior. She also had Alpha-1 deficiency. When you have that and you smoke; it puts you on a fast track to an earlier death. I will be 60 in Dec, and so I realize just how much of her adult life she missed out on. I have to say, when I was diagnosed at 40 with COPD (me, never smoked) I was pretty freaked out.
@suzie2017 If you don't mind my asking, how old is Jess? By the way, my sister's fiancee just moved in with her because his Alzheimer's is to the point where he cannot write checks or conduct business without her help. His dad had it also. Her fiancee is my age, 59.
@suzie2017 If you need extra support, Connect has a Caregivers group led by @Indiannascott, he is a wonderful guy. There may be one for Alzheimer's as well.
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1 Reaction@flib I hope you get back to the gym. Not going will perpetuate the weakness.
I applied for disability because of this illness and I got it. I'd like to know more about getting on Medicare earlier. That would be awesome and help me out with my treatment. Right now I'm so limited to Dr.s and hospitals. It make a lot of stress for me.
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1 ReactionYes I know those days. I've learned not to use up my little bit of energy fighting them. I cave and rest, read, nap. But what is still very difficult for me is making plans with friends. Too many times I've had to call at the last minute and cancel. I've lost some connections because of this. Few people can understand how I can be able one day and not the next.I know some think just buck up and get through as if the weakness is, in part attitude. I've stopped trying to explain, in fact, it is somewhat a mystery to me,
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1 ReactionMy husband turns 72 today. He was diagnosed with Alzheimers in October 2016 due to the Neurologist in Orlando ordering a pet scan where amyloid plaques were discovered. Jess has been showing symptoms of a mental problem since 2013. Sounds like your sister’s fiancée has early onset Alzheimers due to his young age. I have read many books about the disease and chatted on a few social media groups. My husband has some short term memory problems but most of his problems are due to confusion. He has maintained his same easy going personality regardless of all of his health problems, which are many.
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