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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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@katemnOh,
Katherine, that is scary stuff indeed! Just glad they caught it.
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1 Reaction@katemn
Katherine, I don't even want to find anybody locally. They all have a bad rap
down here. Even my Mayo doc said he has heard the same thing. I think the local
docs here are in it for the golf.
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1 Reaction@windwalker .. YUCK!!!!!!!! What a rip! Yeah for Mayo! Hugs! Katherine
@ling123,
MAC and TB look alike during the first two weeks of growing it in a petri
dish. From what I was told, the MAC continues to grow, but changes and
that is how they know it is not TB. I was isolated for fear that it was TB
and that is highly contagious. I cannot recall, why a TB skin test wasn't
sufficient to rule it out. MAC is considered TB's first
cousin.
Thank you so much for the reply. I will look up a practitioner. I do realize it is very important to get that all out. I have had this disease for years now. I use my Aerobika faithfully. In fact, compared to some, I am lucky mine comes out so easily. I feel badly even complaining, so I usually just suck it up. Just sometimes there is just so much, it seems my day is very short, because I spend most of it hacking and spitting into Kleenex. My husband doesn't say anything, but I am sure at times, it is very annoying. thanks for the support of the group. All take care. Fondly, Mary Jo
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1 ReactionMaryjo2sell.....do you have GERD? I ask cause I do.....and when I drink too much fluid....more than 6 ounces an hour...and /or eat too fast or too much....I cough and get more mucus.tdrell
@windwalker, when you said that I was worried that maybe something had changed that I was unaware of.
JK
@colleenyoung Thanks for the link, Colleen. My hepatologist had to go to bat for me to get my xifaxan paid for. Lactulose is around $5 a bottle. Over the course of a month that comes to about $40 or $50. Zifaxan costs over $2000. Thankfully they did pay for it so I was left with paying about $700 to $800 a month for it. Not cheap but in the long run it was worth it. It kept the HE episodes away for almost a year until my cirrhosis got worse and then I had to take both. No one wants to take lactulose. It has very unpleasant effects. When I was in some pain following my transplant my husband kept reminding me "NO MORE LACTULOSE".
JK
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1 Reaction@windwalker That is so discouraging that the local doctors are not that good. I find that here too. There are a few that are good. I think my hematologist is pretty good and for a while I saw a neurologist because my HE episodes were neurological. He was wonderful and when I ended up in the hospital he came and visited me two times, unheard of these days.
JK
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1 Reaction@katemn Katherine, what a great idea to keep a printout. I should bring one about cirrhosis to my PCP. 🙁
JK
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