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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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Hi Amy: My name is Terry. At first, I started all 3 at once. After side effects, was taken off all 3 and was re-introduced one at a time at two week intervals (azithromycin for two weeks alone; ethambutol for two weeks along with the azithromycin; rifampin for two weeks along with the other two). No mention of how long it might be for side effects to present. I would assume that it would be either immediate or close to that but am totally unsure. Don't really want to think about that. Hope that my suggestion of an anti-anxiety is helpful. There is such a stigma attached to taking that kind of medication and that is most unfortunate because it could very well be the key or one of the keys to success. Better days will be ahead.
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1 Reaction@ilgrp4e, PLEASE!! Have her Infectious Disease doctor STOP the meds until she is stabilized. THEN work with her .. start just ONE antibiotic perhaps for ONE week .. watch WHAT side effect .. THEN a second antibiotic perhaps for ONE week .. watch WHAT side effect .. THEN a third antibiotic perhaps for ONE week .. watch WHAT side effect ! DO NOT start all THREE at once!! No WONDER your poor Mom is so Ill. Keep coming back .. we will help you!! Hugs! Katherine
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1 ReactionWonderful!!! Here's to leading us through the forest into the light!
@ilgrp4e, I wanted to quickly get that one post to you. After you have done what I said .. take a list of all your Mom's meds PLUS the new antibiotics .. go to a local pharmacy. Ask to speak to the PHARMACY MANAGER. Now you have to speak up .. YOU have to be your Mom's BEST ADVOCATE! Don't let them put you off! Explain the whole situation to the Pharmacy Manager. Show the list to the Pharmacy Manager .. ask them to help you put together a "Daily "Medication Schedule" for your Mom. Times/with or without food etc.
That should help alleviate some of her issues. Only a pharmacist can tell you WHICH med can be taken with WHICH med without it affecting each other .. deleting some of it's efficiency etc.
Then as you have time .. read some of the back pages of our Forum to see what others have done to alleviate some of the symptoms .. you will learn a lot! @ilgrp4e, .. your Mom is REALLY lucky to have a daughter like you! Good luck to both of you .. I am sending BOTH of you big hugs an LOTS of positive energy in this tough time! Keep coming back .. we will try to help you in any way we can. Katherine
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1 Reaction@beatitnow, Amy, be SURE you do NOT start all the meds at one time!! Allow at least 4-5 day between or preferably a week to see which/what side effect belong to what med? Has your doctor told you this? Also .. did your doctor tell you to start a probiotic in advance? These are the notes I have on starting:
I requested that I start ONE DRUG at a time for ONE WEEK .. or at LEAST 4 days before adding a second drug .. so I could tell EXACTLY which/what drug was causing ANY potential side effect and I could isolate it .. hopefully watch for a side effect dwindle etc. THEN introduce a SECOND DRUG. Frankly WE are in the driver’s seat in our own lives .. our own bodies. Take charge and request that type of schedule if you want it!
PROBIOTIC: take probiotic half hour before breakfast on an empty stomach (when on meds I also took a 2nd probiotic in the evening on an empty stomach)
Amy, these are just my thoughts .. you are in the driver's seat .. your body .. your life! Hugs! Katherine
I too have all 3...found this online if helpful: http://www.uchospitals.edu/specialties/lung/
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1 Reaction@kaystrand, Hello Kay, I am BETTER today .. not to worry! Sorry about your being uncomfortable about the article on Bronchiectasis but truthfully our Forum is MAC and Bronchiectasis .. WHY .. because as Dr. Aksamit told me when I was diagnosed with BOTH at the same time .. the doctors do NOT know which comes first .. chicken/egg thing. Do some people get MAC first and THEN Bronchiectasis? OR do they get Bronchiectasis and THEN get MAC. None of the doctors really know which comes first because there is no money for research to find out.
That is why that article is on our Forum .. because Bronchiectasis is so related to MAC. Because knowledge is power .. when we know better .. we can do better. Knowledge of something can never hurt you .. it can only expand your mind to possibilities to change your universe.
You are indeed blessed if you only have MAC. You are one of the lucky ones! So do NOT worry .. it does not apply to you. Just stay as healthy .. happy and serene as you possibly can .. live your life as well and fully as you can! Keep us posted on your progress .. here's hoping August is a GREAT month for you! Sending you a hug! Katherine
@ilgrp4e, .. do you have a first name? Much more personal! Yes, @ilgrp4e, there is ALWAYS hope! As the old saying goes .. where there is life .. there is ALWAYS hope! And I would say .. where there is a wonderful daughter .. there will ALWAYS be hope! You go Girl! Hugs! Katherine
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1 ReactionSent in separate post a link to University of Chicago...she clearly cannot tolerate the MAC meds when taken all together...others here have spoken of starting one at a time with a few days or a week in between to make sure there's no bad reaction and if there is, to which one...I'm thinking she can also see a Rheumatologist there too and from there have the two docs coordinate her care. What RA meds is she taking?
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2 Reactions@128128terry11t .. Terry , I am really glad you jumped in with this advice .. too often we sit back .. BUT this kind of help may help MANY others .. thank you so much! I also had not heard of a pulmonologist using TWO weeks between the meds .. GREAT idea! If you don't mind I am going to add this to my File Cabinet .. just full of good advice .. again .. thank you! Hugs! Katherine