← Return to (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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@debymacc

I would love to add to this discussion or chat with either of you. I was diagnosed with this disease in 2008. I was on 3200mlg of high powered antibiotics for a year. I recovered completely. I am having some issues now and wondering how each of you are doing.

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Replies to "I would love to add to this discussion or chat with either of you. I was..."

Hi I was just wondering if you are still Mac free, and what antibiotics & amounts worked for you? Do you now take any precautions to avoid getting reinfected like boiling drinking water?

I thought I recovered and after 6 months its back. How are you doing?

How are you doing Heather. I have MAC as well. I thought I was cured but after six months I am going to a new doctor. Yuck. I feel very tired most days. I want to find somewhere to go that I can be cured. I want to live a wonderful life. How are you doing?

Hi and welcome @donut I am doing ok, been on the 3 meds for nealy 2 years but was put on them 3x week(18mths) rather than daily(I have cavities) which I am now on along with Amakacin inhaled, have a ct scan next month. How long were you on the 3 meds before they said you were MAC free, and did you stay on the meds for a further 12 months?

I was on the big 3 for 18 months. I just I wasn’t on it long enough I guess. Are you doing ok?

@heathert, Heather, thank you for jumping to support a new comer! Hugs! Katherine

Hi @donut , I am doing ok. Yes it seems 12 months of treatment after clear sputums doesnt seem to be long enough to keep it away maby they need to up the meds to 2 years after 3 clear sputums? I havnt heard of that happening yet but if they can get rid of some of the MAC with time they should be able to rid us of all of it.

I had a cold in October and it seemed to settle into my lungs. I still have some mucus, so asked my pulmonologist for advice. He said if I am still coughing we could try an inhaler such as QVAR 80, 2 puffs 2 x day for about 2 weeks. If no better, get a chest xray.

Do you have any experience with this inhaler?

@jcarr, (do you have a first name .. more personal!) FIRST question: have you been diagnosed with MAC.

Secondly, yes, I have been using Qvar for quite a long time .. it helps me a LOT in coughing up the mucus from my lungs! BUT I know it is important if you use it to use good inhaler hygiene .. my personal recommendation from my File Cabinet is .. hope you find it helpful! Hugs! Katherine

INHALERS-USE
BUT after some thoughts I realized some things I have been doing wrong and this is my new routine:
1. using inhalers PRIOR to brushing my teeth (had been using after)
2. use an Aerobika device . Use a “huff” cough, (like you were cleaning your glasses and fog them with your breath only more forceful), along with the Aerobika, you can pull mucous out of those lower airways.
3. using peroxide to dampen my toothbrush with toothpaste to brush (purchased a squirt dispenser)
4. using peroxide after brushing for toothbrush storage for sterilizing
I think this routine will help oral thrush by keeping my Sonicare toothbrush sanitized daily. http://www.good-gums.com/sanitizing-your-toothbrush.cfm

@donut, Donna, a question I have been pondering .. DID they stop your antibiotic treatment AFTER negative sputum cultures for TWELVE months which is standard procedure? What was the criteria for stopping your treatment .. what reason did they give you? Also .. what type of doctor were you being treated by? An Infectious Disease doctor who treated other MAC patients? Just wondering? Hugs! Katherine

It has been a terrible situation. Very long story. However, after my U of L doctor didn't know what to do he was sending me to a ID doctor that never called back to set me up an appointment. After several phone calls and my trying to continuing running our businesses I went to my local family doctor and said could you help me if I gave to you information of dr. and then I could be tested her with you and you could be advised as to what to do next. She said yes to help me I traveled to a conference in Maryland and gave her all the information. She treated me with the same med big 3 for the remainder of 18 months then when it looked like I was all better she took me off. We didn't really know what to do. I thought maybe I should have been tested before I stopped but she said if you don't feel sick just stop so I did and Last November it came back. I have taken advise from this forum and have made appt with Mayo Clinic and have consulted with my local clinic and they said they will support me. However, if I have to go back to Mayo Clinic several times to get better I will. Dr Timothy Aksamit, Md is who I have the appointment with on March 1, 2017. I live in Indiana he is in Minn. but I want to live!! Amen!I so appreciate this group! God Bless everyone. Donna 

@donut, Oh Donna, THANK HEAVEN you are FINALLY getting to Dr. Aksamit. TRUST that you are getting to “mecca” … AND to one of the kindest .. loveliest men I have ever encountered .. frankly I just love him .. SO grateful I found him after I was diagnosed with MAC in 2007. You ARE going to LIVE .. KNOW that .. TRUST that .. KNOW that everyone on this Forum will be here for you every step of the way .. you found us .. we will not leave you.

I just CANNOT read “then when it looked like I was all better she took me off” without getting SO angry! Doctors take an oath “DO NO HARM .. that ALSO MEANS .. if you are NOT qualified with ENOUGH knowledge to TREAT A DISEASE .. REFER IT OUT TO SOMEONE WHO IS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! It is just unconscionable that she took you off the antibiotics WITHOUT twelve months of negative sputum samples. Sorry but it makes me SOOOO mad! Well off my high horse! Just glad you have an appointment .. you WILL live! Hugs! Katherine