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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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Will do...sorry I didn't think of that. If she gets notification via email of new posts, hopefully she'll get'em in the meantime.
Boomer, not to worry .. since I included @ilgrp4e, Carmen in my post to you .. I think she will follow the posts .. good job .. thank you! Katherine
@pamelasc1 and @katemn and EVERYONE WELCOME FOR COMMENTS, Thank you for all the information. I have saved it...thank you, thank you. Just to clarify....you took ALL your pills in one sitting before you went to bed? I am taking pills 3 days a week, so for two drugs 2 pills a day, the other is actually 12 pills a day (my pharmacy did not carry the higher mg dosage for the ethambutol. When I talked to the Walgreens pharmicist, she suggested taking the rifampin on its own a minimum of 2 hours before or after other drugs and on an empty stomach. What do you think?
IF ANYONE would like to jump in and tell me how they successfully took their medicine please do. I will "try my best" to look back at previous reviews before tomorrow, but I am starting to get a little stressed because I was thinking about starting the drugs tomorrow, Monday....I have to see how comfortable I feel. (I had been planning on T, Th, Sa), but then I thought maybe I should just do M,W,F's. Ughh....this is nerve wrecking! :/ Thank you for your help.
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1 Reaction@pamelasc1...in addition to the question I just wrote back to you, I was curious...are you losing weight because you have lost your appetite with taking the 3 medications? Are you trying to add calories?...just curious what to expect. Thank you!!
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1 Reaction@beatitnow, Hi Amy, TRUST ME! The absolute WORST thing you can do is begin to be stressed about this process .. just go with the flow .. "trust the process" .. put your energy into what you can control .. and let go of what you CANNOT control! You can control gathering the best information possible from all of us .. BUT knowing each of us have different bodies .. different body chemistries .. ways our bodies will react. YOU will just have to go with the flow .. see how YOUR body reacts .. TRUST your body .. ADJUST to how your body is reacting .. TRUST your body .. WORK with your body. Know that your body is your friend .. know that if you take care of your body .. your body can take care of you in the future! So for now .. do NOT try to control the outcome .. the outcome will take care of itself! Trust the process .. trust yourself .. trust us .. we have been through it and have come out on the out side .. you will also!
**Below is what worked for me .. but keep in mind .. Basically everyone experiments with what med schedule works best for them:
1. 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)
2. RIFAMPIN: Take this medicine on an empty stomach .. OR either 1 hour before or 2 hours after food NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds! (Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Be aware it can cause: Reddish discoloration of Stool or Urine etc.) FOR ME Rifampin caused sleep disturbance so I tried to take it FIRST THING in the morning!
3. ETHAMBUTOL AND AZITHROMYCIN: BEST with an empty stomach! .. BUT either 1 hour before, or two hours after meals! (taking BOTH at one time gives “greater punch!” (NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds!) * take with a LIGHT snack at most
Hope the above helps you .. this worked for me. Hugs! Katherine
@katemn and anyone else interested....Thank you again for your advice, encouragement, and general reminders!....I need that every so often. Okay, so today is my big day...I start my first med today in one hour...my doctor wanted me to start with clarithromycin. Then I will start the next two in the next two weeks as you and my doctor had mentioned. Any advice on the order of the second two drugs I will introduce...I will be taking rifampin and ethambutol in addition to the clarithromycin this week. I was wondering if anyone else has a preference as to which drug to introduce second.
I am going to take your advice, Kate, also and do Rifampin first thing in the morning at 6:00 am with a probiotic before that by 5:30am. I plan to take Clarithromycin and Ethambutol at 9:30 (I am going to try on an empty stomach like you mentioned), take vitamins about 3:30pm, and a probiotic or two before bed. If anyone has any comments or recommendations with my "first draft game plan" I am open to hear any of it! I realize this is my "wish list" but we will see how my body reacts, and I will adjust as needed. Thank you for any and all help or advice! Amy 🙂
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1 ReactionBefore i started i had blood work and a very thorough eye exam. I needed new glasses so i purchased and waited for them to come in so i would be aware of any visual changes. I started on Fri night. So my schedule was never comfortable in my head . Fri, sun, tue, just doesn't roll off the tongue. Make it as easy as possible for you to remember. Now Im on daily and take them all ethembutol, zithromisin, and rifampin at 7pm to avoid nausea. I have alot of other meds so i have them all competing for time slots. Get 2 seven day containers at any store by the parmacy area and keep only your antibiotics in them. They will help you to know when to reorder because you don't want to run out. The pharmacy might have to order them so call ahead to make sure they have time to do so. Let the pharmasist know everything you take , vitamins and supplements, so they can watch for any drug interactions. Also get your hearing checked before you start your meds for a baseline. My doctor didn't order this and I have been complaining at every visit for 3 months very loud ringing and now he is forced to do the right thing and sending me to a ear, nose, and throat specialist that is supposed to be familiar with ottotoxic drugs. Give a sputum afb, culture and sensitivity, blood tests for liver and kidney function, eyes and ears monthly. Also, get calendars one for your purse and a bigger one for the fridge for 2 years if possible it helps to keep track of all your appointments and test. I keep a notebook for any side effects or questions i need to ask the doctor. I hope this helps to make things easier for you.
Becky
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1 Reaction@chinasmom...Thank you. Yes, I have done all of the above, but my doctor did not order a hearing test. I will look into this. Do you know which drug causes this?
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1 ReactionI think Katherine's game plan is the best Amy. The only difference for me was the Ethambutol I had to take two tablets in the a.m. and three before bed. The rifampin was also at night, but like Katherine said you know your body best. You will need to listen to it and it's infinite wisdom. And call your doctor when you need to! Mine told me to call him any time day or night. Try not to worry. And I also know that is easier said than done. Some of us tend to have that as our middle names. Faith would be a better one! Irene
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1 ReactionAmy, I had check to see which antibiotics were affecting hearing azithromycin, clarithramycin, and other aminoglycosides. Everyones body is different so we have different side effects and sometimes we get lucky and have no side effects.
Here's hopeing you have none!
Have a great day!
Becky
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