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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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I have been diagnosed with bronchiectasis recently during this 10 month period of multiple pneumonias. The MAC/MAI was diagnosed after a bronchoscopy with lavage. Hard to tell of my symptoms are from active MAI or something else. I start the third antibiotic today (rimpafin?) and keeping my fingers crossed!
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1 Reaction@21042, Oh my, I love your attitude!!! And I think a good attitude is essential when dealing with any chronic illness.
Boy, I sure am jealous that at 75 yrs old, you can keep up with anyone 25 years younger. Bravo to you!
Re. the meds, I too was so very nauseated when beginning the drugs, or when I had to change where I got my drugs from (different manufacturing plants perhaps?) And the lethargy and fatigue is awful. Yep, "don't quit", it does get better. Best wishes!
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2 ReactionsNJH said I do not have bronchiecstasis....the main reason for my 2 year duration cough and MAC grown from culture on bronchoscope ( locally) was from silent aspiration while awake and asleep from my Gerd.
In SE Wisconsin we have NTM in city water pipes....soil...aerosolized.
My first culture upon arrival at NJH grew NTM on the first of 3 phases....Not in 2nd or 3rd phase.....
Cultures from day two and 3 that I produced.....grew NONE even after several months.
My view is that on the first day I still had NTM in my stomach (from drinking it in Wisconsin....which then got aspirated into my lungs and on first culture done at NJH....a few could still show up on initial culture .
I now drink bottled spring water and am trying to loose weight ( another recommendation) and other measjures for the Gerd.
As previously stated....they gave me a methocholine test...the gold standard to check for asthma...which after 30 years of treatment I don't have....but I have chronic allergic rhinitis ( hence lots of dripping mucus from it...I see allergist at home....
They did a sleep study ( local bronchoscope showed obstructive condition which I do not have obvious symptoms of) which showed I need CPAP since I had 47 apneic events an hour. So since April I use the CPAP machine nightly.
So....long answer....I am doing "ok" and thankful I have Medicare and great supplement.
Also agree re need for update diagnostic machines....Cat scans done at medical center....brand new 200 bed hospital part of Aurora systemwisconsin
Biggest provider and then 3rd at NJH.
Tdrell
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2 Reactions@jentaylor What you're experiencing is not just normal, but necessary for your healing process; the 5 stages of grief - denial, anger, bargaining, depression and acceptance. We all grieve the loss of our health when sickness of any kind let alone multiple issues first hit(s): mine is RA and MAC/Bronchiectasis; others have their multiples, and those who give themselves permission to experience the stages of grief get better faster. You appear to presently be in stage II, anger. Good! Be angry! Being as unwell as you are feels sucky! But know that as you advance through the stages, you'll get a better grasp on what to do and how to do it. Then you'll really be on your way to better health.
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3 ReactionsTerri, any way you would want to move from that area? You will have to be
careful not to re-infect yourself there. Learned from that seminar that many
people who come down with NTM infection again is due to catching it in the same
places they caught it before. Did you see my post about hot water heaters being
a major source of MAC bacteria? Did learn also that the MAC tends to be worse in
certain regions.
Boomer is right Jen. I went through all of those stages. Now, I just
advocate for myself and others, give myself permission to rest when my body
demands it, accept that things are the way they are and not lament for what I
longer have. It still sucks, I know. I still enjoy life, that is the main thing
for me.
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2 ReactionsHi Terri. I am so glad that you do not have bronchiecstasis. That is one big blessing to be grateful for right there.
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2 ReactionsLindam272....I found an excellent site on Pulmonary nodules by going to "My.clevelandclinic.org" site and putting Pulmonary nodules" by the search icon tdrell
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2 ReactionsThank you Terri, I will check it out.
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1 ReactionWind walker....no thoughts of moving from here....I predict that at some time in the future...NTM. Will be found in every state.....none the less I take precautions such as not drinking from water or ice made by refrigerators....drinking spring water....leaving door open when showering not inhaling steam....no longer going to YMCA to use their warm pool or hot tube....water heater set at 120..I will get a repeat CAT scan and 3 separate NTM cultures done by NJH....a year from the ones done in 2017.tdrell
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