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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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@janovr Thank you for sharing this sound advice about living your life to the fullest. While I do not share your health issues, I do send you my prayers for strength and blessings. I am a liver/kidney transplant recipient, and I can relate to what you are saying and feeling. Have an enjoyable day.
Rosemary
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1 ReactionHi @tdrell I work in a call center. I only had CT scan, xray, afb culture, sputum culture and broncoschopy. I dont smoke and dont have asthma. When I was diagnosed with bronchaectasis in 1997 my pulmo never explained to me he just based his diagnosis on xray and afb culture and I took anti TB drug for almost 3 years. I was never diagnosed TB but he said the treamemt is same as TB. After 1 month of taking meds I stopped coughing and seldom had cough for 10 years I though everything was OK I was cured. It started back when I started to work in a call center I suspect that since I work on night shift and having trouble sleeping on daytime my immune system begun to drop thats why I got an NTM. Im planning to find a day shift job to see if this will help. THANKS!
imeehaigt l think what you are saying..that immune system affected by schedule could be true...also you are older.....that affects immunity...and being a female. Do you have GERD?? HAve you watched the two sets of videos from workshops on NTM from National Jewish...see earlier posts l put on with the addresses. tdrell
katemn...so happy for you that you are stable ...when do you have to return to Dr A at Mayos . Just had a thought....Would that all of our doctors would say "you are totally free of NTM....no reason to return"....what a dream at this point !! tdrell
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1 ReactionHi Terri! I do not need to return for a follow up appointment with Dr. Aksamit for 5-6 months .. so probably late April 2017 or so to make sure I am still "stable"!
But don't forget .. we are NOT "totally free of NTM". I STILL have mycobacterium in my lungs currently .. it is just considered "Negative" .. ie .. not colonizing at this time. That is why I/we must continue our follow up appointments with our doctors .. those nasty critters CAN rear their ugly heads again! Because we can become "Stable" after antibiotic treatment as I have been since May 2014 .. but I am NOT "TOTALLY free of NTM" as you mentioned .. or "stable" like some others labeled "Asymptomatic" .. not needing antibiotic treatment at this time. That is why we MUST continue to be diligent in our "self care" .. healthy eating .. exercise .. seeking serenity ie limiting stress that affects the body .. maintaining healthy relationships with others .. being kind to ourselves ie "filling our cups" .. whatever that means to each individual person. THAT dream we CAN fulfill .. self care! .. and THAT I KNOW you are making every effort to do! Hugs to you! Katherine
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1 ReactionI am new here and have read all the posts but have not read anything about eye issues until today. Before I was put on " the three," I had to have a baseline eye exam for color vision with a repeat in six months. But more importantly I was not allowed to drive anymore because of the possibility of color changes (not being able to identify a red light). I have not read about any of you dealing with this issue. I am an extremely independent woman, and that was a very bitter pill to swallow! Thank you. Irene
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1 ReactionImee, you need to hear me! This is VERY important .. now I do NOT want to alarm you .. MANY people do just fine on Ethambutol .. BUT ASAP .. I want you to make an appointment with a GOOD Ophthalmologist. I want you to tell them: I am on an antibiotic call Ethambutol. I want to get a BASELINE Vision Test.
THEN request a COPY of that Baseline Vision Test .. FOR YOUR OWN MEDICAL FILES!!
What I have read for recommended testing:
RECOMMENDED TESTING:
1. Ethambutol – color vision and visual acuity: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
2. Azithromycin – hearing and balance: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
3. Rifampin - CBD (blood counts), liver and kidney function tests: GET BASELINE PRIOR TO STARTING .. THEN MONTHLY
Then as you know .. I am BIG on Due Diligence. I don't mean to alarm you since many people do just fine on Ethambutol .. but after four months on Ethambutol I was in a car .. noticed I could not read the green road interstate signs the same way my husband could .. timing etc. I immediately got an emergency appointment with a Cleveland Clinic Ophthalmologist who did incredibly detailed testing of my eyes. Took me off Ethambutol .. within a year my long distance and color vision return 100% .. BUT I caught it very early. NOW .. Ethambutol is a VERY good antibiotic that is tolerated just fine by MANY people .. so do NOT get weirded out!! Just be watchful of any changes in your eye sight .. get that baseline eye report .. AND be aware of any vision changes. That is a part of our Due Diligence .. not to get crazy .. but to just be watchful. Sending you a hug! Katherine
Ethambutol 800mg (vision loss 02/12)
Welcome Irene, SO glad you have found us! Great that you had the baseline eye exam BUT that sounds absolutely goofy that you have lost the right to drive! If I was sitting in your shoes the FIRST thing I would do is go right back to the Ophthalmologist you saw who did your baseline. THEN get a written statement from that Ophthalmologist that CLEARLY says that you CAN identify the color red plus all other colors. THEN get a written statement from your Pulmonologist stating that you do NOT have ANY vision issue that could curtail your ability to drive.
Then take those two written statements to the Driver's License Bureau .. request to speak to a SUPERVISOR .. do NOT be put off by some underling who doesn't have the authority to correct the problem .. remember "The squeaky wheel gets the oil!" .. then when you have the ear of the Supervisor remember "You get more with honey than vinegar!" .. but be FIRM. Indicate that a mistake has been make .. a bureaucratic error that you are SURE he/she will be happy to help you correct with the complete documentation you have brought! Do NOT give up until you have gotten the problem resolved. Keep going higher up the chain until you get results!
Irene, in my opinion there is ABSOLUTELY no reason for this to have happened to you .. UNLESS the Ophthalmologist has already found you have lost your color vision .. at which point .. your Pulmonologist should have taken you off Ethambutol ANYWAY!! Keep in mind that EVEN when I did lose some of my color and distance vision due to Ethambutol .. NO one even suggested I should lose my driver's license. This is ridiculous!
Irene, take the above steps and let us know what the outcome is .. we will be thinking of you! Sending you a hug! Katherine
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1 ReactionYes, I did have the vision test. I am not on anything right now as I had such horrible side effects, When you drop to seventy seven pounds that's a big deal! I have had very caring and wonderful pulmonologists and infectious disease doctors. I will be revisiting the medication situation soon as I have no quality of life. I have gone from the ever ready bunny to the lethargic tortoise. I have learned several things from this forum which have been helpful. Thanks for the hug. Back at ya! Irene (not Imee - I think that is someone else)
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1 ReactionNope, I meant Irene! If/when you do decide to go back on the antibiotics .. AND you have Infectious Disease Doctors you trust .. make SURE you go on one antibiotic at a time .. preferably at least a week apart .. so your body can adjust .. and you can see which one is causing which side effect. I also lost 18% of my body weight but kept to it and was glad I did because now I have been stable since May 2014. Great that you have been reading past pages of the Forum .. good info on how to handle the side effects etc. Good luck to you Irene .. keep us posted! Hugs! Katherine