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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 I was raised by two smokers. My mom ALWAYS had a cigarette burning in an ashtray beside her. They smoked up the house terribly. And traveling by car was like being tortured in a smoke box. Doctors tell me that growing up with so much smoke def contributed to my health condition today. I have always detested that habit.
@suzie2017 There is a lot to be said for an easy going personality. I would imagine that makes caring for him a bit easier. I have a friend who has Alzheimer's and it was obviously coming on at age 38. He would tell me the same stories over and over and over. His mother and Grandfather had it as well. He is 59 now and on disability.
@flib I am right there with you. It is hard to make plans ahead of time. I too have bailed on people or just refuse to commit because I cannot count on the energy level. I have lost two friends over it. One was a close friend who hasn't spoken to me since April 5. People don't understand; hell, my own husband doesn't understand. They don't get it. I know it looks like we must be faking this because we can shop all day at a Mall one day, and then the next day; can barely move! It is as if someone had pulled a plug out and every ounce of energy has drained out. It is very weird. I now try to pace myself. I allow myself ONE fun (active) thing to do a day. NOT go to the gym, then out on a boat, then out to dinner........Outtings aren't the only thing I have to pace. I pace everything. Do you find it takes you way more time to get things done than normal? I find that I do things in stages, like little hurdles. Do a little, rest a little, do a little, rest some more. Then there are the odd days where I do have energy and go all day. I think every one of us on here knows exactly what we are talking about.
@tutti I am so happy that you got your disability. Now you can devote your time to your health. There is a two year waiting period before you can go on Medicare unless you are on dialysis or have Lou Gehrig's disease. I can only suggest perhaps using charitable organizations that help pay for drugs and treatment or go to non-profit health centers like the Mayo Clinic, Cleveland medical, and others like them closer to you. When you go to a non-profit institution, they tend to charge less for services and work out a payment plan. The Healthwell Foundation has helped me out tremendously with a very expensive medication. If you want to share what you need help with, perhaps I can help locate some resources.
@colleenyoung i totally agree with you Colleen. Gaelawree brought joy and light to this group! Speaking about her passion was Thanks for understanding that we are more than our disease!
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2 Reactions@tutti I'm on disability and Medicare...started at age 61...what would you like to know?
@windwalker Hi Terrie, ya it’s actually going to be easy for me since my son has a inversion table I can use. An adjustable bed would be helpful or get a piece of plywood & create a slated surface.
@windwalker Thanks Terri, yes I wonder why too. Doesn’t make sense to me why I have this.
@nick52 thanks Nick & Colleen
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1 Reaction@windwalker according to Dr James F. Balch, MD in his book nutritional healing ginseng should not be used by those with hypoglycemia, high blood pressure or heart disorders. There is Siberian, American and Korean ginseng but the properties and uses of all
three are generally referred to as ginseng. Be careful with ginseng! Nick
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