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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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@oldkarl, Hi. I looked up the protein prion and AL. That is some serious stuff. I never knew anything like that existed. How are you doing?
@jaejack I think we all scrambled to do everything right to avoid mac when we were first diagnosed. I am not as fastidious as many of the suggestions say we should be. I just cannot live in that kind of fear. I do use common sense on many things like avoiding hot tubs and swimming pools, hospitals, and sick people. I am religeous about nebulizing the saline and staying on my medications.
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1 Reaction@flib I plug the neb mouthpiece with my top lip when I am exhaling so as not to lose any steam.
@windwalker Hi, Terri. If I am reading the signs right, not well. ARCI.org has an android app that gives a prognosis based on some of your lab work, including Troponin, sFLC, & others. If it is accurate, I should make it into some time next year. Then the fibrils will invade and cut off the sensory-motor nerves between the brain and heart. I am already started into dementia. But Oh, well. That's the way it works.
@alleycatkate Yes, i have the whole business, apparently. We are pretty certain the name of my dyscrasia is Gelsolin, or some other mutation very close, because I have the "amorphous white matter in your (my) cerebral cortex.) My kidneys have not functioned properly for several years. My liver, which makes the stuff, is in stage 4 fibrosis. and on and on. Pancreas thyroid, prostate, lungs, blood vessels, eyes, skin. The fibrils have invaded almost every tissue from my brain to my toes including my lungs and heart walls and vessels. But fortunately, they are spread all over the place, and there is a set number of them, so that slows the process down. But by the time one is 80, it moves faster because it has been doubling and doubling along the way. Yes, it has been very difficult to track down because the docs don't want to fail, and there is very little they can do. But some new meds are on the horizon so there is hope. https://bit.Ly/1w4j7j8
@oldkarl ... Oh God, I am so sorry to hear your news, Karl. It is sobering. I will pray for you and hope that soon there will be meds that can help you. The link you posted on new meds does not open, so I can't see what is in the works. Are there any upcoming drug trials that you can get involved with? I hope you are not in pain. Kate
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2 Reactions@heathert Thanks, I'll try it.
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1 Reaction@oldkarl Karl, I am so sorry about your prognosis. Do you have a good support system as in family and friends?
Hi Terri, I just got back from Mayo Clinic! It was a great experience to meet the doctors there. I am so amazed at the knowledge of the doctors at Mayo. I now know more of about what’s living in my lungs that the last four years. Love my pulmonologist at Mayo!!! Thanks Terri. I was tested by sputum and blood, and found out that.... I have Mac, bronchiectasis and pseudomonas. I was never told before that I had pseudo even though I did a bronc 4 years ago no one told me. So I have this and it’s fast growing bacteria. But I got the best doctors now. I am not taking any big 3 again but I’ll be using. Saline! The acapella and inhalation Tobramycin! I feel really good about the treatment plan and I see him in 6 months. I feel blessed and I am very grateful for all the help guys. Rita.
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1 Reaction@heathert...hi there...can u tell me the name of your nebulizer...mine is a PARI, but has tubing...hard to clean....tks