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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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Dear Katherine, and all.
My wife had been diagnosed few days ago with MAC. She had Bronchiaticsis since 2000. I really would appreciate it listening to you more about the medications you did, side effects, and how successful they were. I hope we are able to reach Dr. Timothy Aksamit at Rochester Mayo Clinic.
God bless you
N.
What are her current symptoms? I ask b/c if she's asymptomatic docs may take a wait and see approach as they have with me...I have bronchiectasis, MAC, and RA...
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1 ReactionI fired my pulmo b/c he did not complete the process w/materials from bronchoscopy and find out which strain I have therefore which meds best for it... I was quite disappointed when I learned he hadn't done that - now have a pulmo who knows better... ensure your doc has run that final test for the strain and the best med for it...
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1 ReactionThis is why I got the 0.2 micron whole house filter recommended by Nat'l Jewish that eliminates MAC bacteria from the system - be aware that if someone tries to sell you an additional UV light, not needed, as UV lights simply render bacteria/viruses inert, doesn't kill'em...so filter enough...
Hello N, so glad you found our Forum .. your wife is lucky to have you as a companion on this journey. I know it meant a lot to me to have my husband beside me every step along the way. Many do not have that.
Keep in mind that you will need to wait until the MAC has been cultured to see just what strain of MAC she has .. THEN that will tell what antibiotic will be best for that particular strain of mycobacterium. It is important that if you are unable to get to Mayo Clinic .. that whatever Pulmonologist you work with .. you ask them "How many MAC patients have you treated in the past 12 months?". Make SURE you find one that knows about our disease .. many do NOT!
Then make sure they culture the mycobacterium to see which antibiotic will fight the MAC the best. Then I would suggest you read through the past pages of this Forum as you have the time and energy. You will find that I am big on "Due Diligence" .. educating yourself on our disease! No one will care about your wife as much as you will .. you will have to be her BEST advocate! My husband has his own health issues .. and trust me .. I am a mother tiger getting the best care for him!
N, I would especially recommend an article I just recently happened upon .. REALLY interesting .. lots of data that I WISH I'd had available when I was first diagnosed. It was meant for doctors .. so is VERY detailed so don't let it scare you off .. but if I was you I would print it off and keep it handy as a reference as you are dealing with your situation. I have put the link below:
http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf
In terms of side effects .. each and every person will be different with different reactions because our bodies are different. Personally I am SO sorry I delayed treatment .. my side effects were very bearable. As you read through the pages of the Forum .. you will find most people settle down and can live pretty normal lives. Myself, I have been off antibiotics and "stable" since May 2014!! Yeah!! I travel .. have fun and lead a full life!
Keep in mind that if you can't get into Dr. Aksamit .. they work as a team at Mayo .. so I really don't think you can go wrong getting into the Pulmonology Department at Mayo .. say you request Dr. Aksamit but will accept one of his associates .. telling them your wife has already been diagnosed with MAC.
N, please keep coming back with any further questions or concerns ... we will be here for you and your wife on this continuing journey .. and tell your wife that we are all sending both of you LOTS of positive energy and a Hug! Katherine
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1 ReactionWe downsized from our home to a condo so a whole house filter would be great but not possible. Instead we installed the best possible furnace filtration system on our individual furnace .. and did a couple of other things .. hopefully it will be enough.
Terri, you are such a sweetie! I needn't have worried about you! You have more going on than two average people! Your list is a GREAT one for fun things to do for people reading back pages of our Forum .. great for our "Library"!
Your thoughts on ice cubes really got me thinking .. because despite putting in that GREAT new water filtration system by the sink that I'm so happy with .. I've continued to use ice cubes out of the refrigerator ice maker! Really dumb! Really because we have a side by side refrigerator .. so the freezer is pretty small .. and FULL! But your note really has got me thinking .. dumb to go to all the trouble of the filtration system and then "dirty" it with bad ice cubes! I'm going to pull out those old ice cube trays I have in the top of the cupboard and use them! Thanks for the thought! Hugs! Katherine
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1 ReactionHi Jill, I know that when I see my reports from Mayo Clinic from my sputum cultures .. sometimes they refer to a MAC .. but when I have been treated with antibiotics .. it always refers to "colonies". So I have felt personally that the MAC doesn't go away .. that is why I have been "stable" since May 2014 .. checked frequently .. just to make sure they don't "colonize". This would be a good question for one of us to ask our doctor! I am seeing Dr. Aksamit soon .. I'll TRY to remember to ask him! Hugs! Katherine
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1 ReactionNnassiri...you will find this support group is very helpful...our mentor Katemn is awesome with guidance, resources, hope, references, and pure compassion.
As your time and energy allows there are videos posted from another center of NTM specialists...out in Denver....they have workshops with experts on NTM from USA and other countries....they are well done...divided into 30 to 40 minutes segments.
Here they are for typing into your computer
Nationaljewish.org/ ntmvideos. For 2015
And
Nationaljewish.org/ntmvideos2016
Tdrell
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1 ReactionKatemn....i really used to hate making icecubes before refrig icemakers came on the scene...it was a great thrill to get a refrig that made ice.....i dread checking for the trays in the downstairs discard space. .am sure i gleefully brought to Goodwill.....so now will have to scrounge around at garage sales etc. Arrgh. And...loose space in the freezer to put them to use....this is as bad as switching to baths from showers...tdrell