(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

I went in for my CT Scan yesterday and the radiologist was the same one I had last time. She makes side comments. At the end she said the doctor will call me in a couple of days. I said I have an appointment next week with the pulmonologist so we will discuss it then. She said or your doctor will call you in a couple of days. This upset me very much. Am I reading to much into this? The last time they also found a lump in my breast and gall stones. Gall bladder is gone now and breast they are watching. I have been diagnosed with MAC but am not doing the Big 3 yet.

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@katemn

Hi Kathy!
So glad you got in! I always make sure to set my next appointment while I am there for a 3 month follow up if needed as he is hard to get into.

I hope you like him as much as I do .. as far as I am concerned he just “walks on water”! At my age I’ve dealt with a lot of various doctors over the years .. without a doubt he has been the most caring, watchful and on the ball I’ve ever had. Of course as in all medicine you MUST be your own advocate .. EDUCATE yourself .. keep in mind that NO ONE knows your body as well as you do .. question until you are satisfied that you understand etc.

Hope your appointment goes well! If you are interested .. from various sources I put together a form to take to appointments to remind me of what questions to ask. If you are interested I could email it to you .. you could then adapt it to your own needs. Email me if you are interested .. I think you have my personal email.
Best regards,
Katherine (Kate is just my anonymous name!)

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I would love the form of question to ask. Thank you.

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@tinaesims

I went in for my CT Scan yesterday and the radiologist was the same one I had last time. She makes side comments. At the end she said the doctor will call me in a couple of days. I said I have an appointment next week with the pulmonologist so we will discuss it then. She said or your doctor will call you in a couple of days. This upset me very much. Am I reading to much into this? The last time they also found a lump in my breast and gall stones. Gall bladder is gone now and breast they are watching. I have been diagnosed with MAC but am not doing the Big 3 yet.

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@tinaesims First, it's important for your health that you now allow less than optimal situations upset you; if you have faith in your doc, that's all that matters and you'll go over all with him. Your appt is next week, no next month, so feel confident in your decision and move on!

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@sounder27

Hi. I went for an ablation just before this past Christmas, was admitted, readied for surgery, and then the anesthesiologists put s stop to it because of the excessive mucus that I was coughing up due to my Mac and brochiectisid and narrowed esophagus. They told me I couldn’t have the ablation until I cleared up those conditions. I am discouraged and still coughing. I have gone part time with my job which is working with the public designing kitchens in a big box store. I have to tell my clients that I am not contagious. They all think I’ve got bronchitis or pneumonia. My pulmonologist has put me on doxycycline for 30 days which I will start tomorrow. I slso have untreated sleep apnea and gerd, so I sleep on my back on a wedge and this dries my mouth out badly. I was not able to tolerate a c p a p. I’m not sure where to go from here so I just keep putting one foot in front of the other and keep going without thinking about it as much as possible.

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@sounder27 first…no one had a clue that you weren't a candidate for anesthesia when they knew of your conditions? Doesn't give me lots of confidence in your docs… That said find out which condition needs the immediate attention in order to get your procedure so you can get on it…and get more opinions

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@boomerexpert

@sounder27 first…no one had a clue that you weren't a candidate for anesthesia when they knew of your conditions? Doesn't give me lots of confidence in your docs… That said find out which condition needs the immediate attention in order to get your procedure so you can get on it…and get more opinions

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Thank you. You are right. It seems all my doctors are just not coordinated. In my state of RI there are several healthcare networks and they do not share records without all kinds of paperwork and written permission

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@sounder27

Hi. I went for an ablation just before this past Christmas, was admitted, readied for surgery, and then the anesthesiologists put s stop to it because of the excessive mucus that I was coughing up due to my Mac and brochiectisid and narrowed esophagus. They told me I couldn’t have the ablation until I cleared up those conditions. I am discouraged and still coughing. I have gone part time with my job which is working with the public designing kitchens in a big box store. I have to tell my clients that I am not contagious. They all think I’ve got bronchitis or pneumonia. My pulmonologist has put me on doxycycline for 30 days which I will start tomorrow. I slso have untreated sleep apnea and gerd, so I sleep on my back on a wedge and this dries my mouth out badly. I was not able to tolerate a c p a p. I’m not sure where to go from here so I just keep putting one foot in front of the other and keep going without thinking about it as much as possible.

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@sounder27 this all natural cough syrup I order from Amazon has saved me!
Broncolin/Propolis and they also have cough drops!
Amazing stuff!

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@janovr

@sounder27 this all natural cough syrup I order from Amazon has saved me!
Broncolin/Propolis and they also have cough drops!
Amazing stuff!

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Is it the fluid extract for Adults and Children or the Honey syrup herbal supplement? Ordering now along with the cough drops.

Liked by Dee

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@sounder27

Hi. I went for an ablation just before this past Christmas, was admitted, readied for surgery, and then the anesthesiologists put s stop to it because of the excessive mucus that I was coughing up due to my Mac and brochiectisid and narrowed esophagus. They told me I couldn’t have the ablation until I cleared up those conditions. I am discouraged and still coughing. I have gone part time with my job which is working with the public designing kitchens in a big box store. I have to tell my clients that I am not contagious. They all think I’ve got bronchitis or pneumonia. My pulmonologist has put me on doxycycline for 30 days which I will start tomorrow. I slso have untreated sleep apnea and gerd, so I sleep on my back on a wedge and this dries my mouth out badly. I was not able to tolerate a c p a p. I’m not sure where to go from here so I just keep putting one foot in front of the other and keep going without thinking about it as much as possible.

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@sounder27, It sounds like your GERD may be the culprit behind your lung issues, which in turn is hampering your ablation. Have you had time toread up on how to control acid reflux?

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@windwalker

@sounder27, It sounds like your GERD may be the culprit behind your lung issues, which in turn is hampering your ablation. Have you had time toread up on how to control acid reflux?

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I have been taking omeprazole for several years, sleep on a wedge and eat my last meal of the day at 4. Beyond that I should say that I probably do not follow the diet very well. I do have a couple of cookbooks for acid

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I would like to hear about people who have NTM but it is somewhat mild – cough throughout day, excess phlegn, so not being treated except with pulmonary clearing, flutter valve. Does it improve? Do you eventually have to go on meds?

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@windwalker

@sounder27, It sounds like your GERD may be the culprit behind your lung issues, which in turn is hampering your ablation. Have you had time toread up on how to control acid reflux?

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Your suggestions have spurred me to consider becoming more disciplined in my approach to my multi faceted problems. It seems one is responsible for the other like a cascade of physical effects that influence the others. Sometimes it’s difficult to find the point of origin and begin there to improve the big picture. Thank you for pointing out the place to begin the improvements and encouraging me to action on my own behalf. I am grateful for finding this forum to share our experiences regarding our methods and products that improve the quality of our day to day coping with all the health issues that we share.

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@kristiemlove

Is it the fluid extract for Adults and Children or the Honey syrup herbal supplement? Ordering now along with the cough drops.

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@kristiemlove … sorry for the delay!
The great Broncolin honey syrup with Propolis . All natural. Too, the cough drops are great!
Jan in Fl

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@windwalker

@sounder27, It sounds like your GERD may be the culprit behind your lung issues, which in turn is hampering your ablation. Have you had time toread up on how to control acid reflux?

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@windwalker … Wanted you to know Barb, Eva and I met for lunch today near Orlando. It was great to meet face to face with other MAC/Bronc
patients. If you live near Leesburg, Clermont , Orlando contact me @janovr. We plan to meet again in several months for lunch
and share new ideas. Jan

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@janovr Jan, that is wonderful! At least there is one silver lining to this disease; we are creating new friendships. I live in S,C., but if I ever get down your way again, I will look you up. I have one member, @nannette, who lives 40 mins from me. We see each other occasionally and do lunch. There is a member visiting my area for a winter vacation that I plan to meet as soon as she and I are over our colds. It is so nice to be with other people who understand our limitations. Just yesterday, I met with a long time friend of mine yesterday, and had to explain my limited energy AGAIN to her. She acted annoyed that I couldn't just pack up my house and move all at once. Well, I am annoyed with her that she has to keep asking me why I don't have energy. Geeze!

Liked by anniepie

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@janovr

@windwalker … Wanted you to know Barb, Eva and I met for lunch today near Orlando. It was great to meet face to face with other MAC/Bronc
patients. If you live near Leesburg, Clermont , Orlando contact me @janovr. We plan to meet again in several months for lunch
and share new ideas. Jan

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@janovr What is Eva's @name? I don't know which member she is. Thnx!

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