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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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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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In my 12 year MAC journey I have recently reached the stage where I must start medications. I have GI track problems when taking antibiotics. What types of nutrition changes have any of you made to tamp down the GI difficulties?
@mac5ia....welcome to the site/group. I so far am not on the antibiotic treatment but am monitored at National Jewish in Denver. Many others are on or have been on Rx. They will no doubt share their valuable tips.
And also....read and view all past comments on this site. And as time and energy allows there are videos recorded at patient centered workshops that are awesome.
NTMINFO.org is a very helpful bridge.....
Again...welcome. Tdrell
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1 ReactionI have a banana every day, Yogurt (greek) and the Probiotic recommended by the National Jewish Center, I take my Rifampin on an empty stomach and the others with food
@jkiemen i’m curious what kind of Probiotic is recommended by the National Jewish ?Center
to all Connect MAC/Bronchiectasis members: do any of you have oxygen at night, night and day, 24/7 ? Just curious as to whether this is sometimes helpful.
Pat
Thanks
@joan I agree with you Joan! Medication can be worst then the Disease. Eat a goos diet and take natural product (consult a nutritionist or oesteopath) at least you won’t have all the secondary effect. All medication is a trial and error (we are ginny pig)
so if it doesn’t work find something that works with less effect on your health!
Fortunately, some of us are lucky to stay in the “watch and wait “ group. Unfortunately, some of us get “promoted” to the medication group.
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1 ReactionCDC and NIH primary governmental funders of research...but their budgets continue to be cut...what we must do, beyond letting them know how serious and prevalent MAC/NTM's are, is to vote in legislators who understand the value of their funding and will increase it.
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2 ReactionsI was diagnosed with MAC Pulmonary March of 2017 I had top right lobe removed day before Thanksgiving the bacteria buried itself deep in the lobe so antibiotics would not have worked. Since surgery I have splatters here and there on other parts of the lung so I’m starting my cocktail of antibiotics today. I will mention that the surgery is the most invasive and painful a body can go through. The ribs from being separated are beyond painful along with cut nerves and muscle. It’s the middle of January and I’m still in a lot of pain it takes a toll on you mentally and physically. I do not get much accomplished I can do a pad of laundry and I’m them worn out. The incision for what ever reason busted back open so I have a nurse come 2 times a week plus my husband does all the work because it has to be changed and packed 2 times daily. I really suggest you be persistent with your doctors about how deep MaC has gone into any part of lung before surgery. It’s been brutal.
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