1. < MAC & Bronchiectasis

Treatment Option

Posted by cowgirlmt @cowgirlmt, Nov 3, 2017

I recently was diagnosed with MAI in late August 2017.. This all started in May when I was admitted to the hospital for pneumonia. They found a spot on my lung, and I had to have a lung biopsy done in July. My pulmonologist put me on the Big 3(Clarithromycin, Ethambutol, Rifampin). I could not tolerate any of those medications so they had me stop all medications and referred me to an Infectious Disease doctor. Around 3 weeks ago infectious disease Dr. started me on Zithromax 500mg Daily. I have not noticed a change in my symptoms, and I am having more severe pains. I just turned 27 this month, and I am just disheartened because nothing seems to be helping. I had a flare up yesterday, and was put in observation. The only thing they tell me is to take pain medication, and may have to start me on nerve medicine. This is not something that I want. I have never taking medications in my life, and now all I do is try this medication or that..
I am just curious if anyone else have had similar issues.. I am just trying to find answers, thank you for taking the time for reading this.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

cowgirlmt | @cowgirlmt | Nov 7, 2017
In reply to @dmarks "I have MAC as well and was treated with the big three and could not tolerate..." + (show)
@dmarks

I have MAC as well and was treated with the big three and could not tolerate ethambutol so my dr. put me on Azithromycin, Rifampin, and inhaled Amikacin. This was effective and got me into remission yet I again tested positive soon after. One drug cannot treat MAC and to put you on that may cause you to become drug resistant. I would find another Dr.

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I am just concerned for the fact that if I do happen to get sick, not sure what medications I will be able to take at that time. Or if I will have to have IV medication. I have tried to do a sputum test, however I cannot cough anything up. I cough all day/night long, however never cough anything up. I contacted the office to get the results from my biopsy/lab.. Have not received them yet. I feel that at this point it is just a guessing game as to what I need to take.

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dmarks | @dmarks | Nov 7, 2017

Who is your primary care ID dr. Have you tried to go to national jewish health hospital for an evaluation?? How can the Dr. advise you on meds if they can't determine what type of MAC? maybe i need to reread you first email and that it is identified.

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4 replies
Rona F | @ronaf | Nov 7, 2017
In reply to @sophie1019 "Hi I was diagnosed with MAC. I am on rifampin, azthromycin and moxifloxcin. Plus I have..." + (show)
@sophie1019

Hi I was diagnosed with MAC. I am on rifampin, azthromycin and moxifloxcin. Plus I have a pic line inserted..I feel good, but want to come off some of these meds.

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Hi, I did see both your replies. I have quite a few questions. Hope this isn't too much for you. 1. How long were you on treatment; i.e. antibiotics before having surgery & for how long were you on them? 2. Were your sputum samples negative? And if so, how many negatives did you have in a row? . 3. Were you on antibiotics at the time of surgery? 4. After surgery did you continue on antibiotics and for how long? 5. How long were you MAC free? i.e. negative cultures, no symptoms after surgery? & how much after surgery did you get reinfected? 6. Is this correct, you had cavitary lung disease?i.e a cavity or more than one in one of your lungs? What was your diagnosis, besides having MAC?
That is such a bummer that you got it again. I have had 12 negative cultures in a row. I basically have no symptoms. I basically feel pretty darn good. How was the actual surgery for you? Recovery? Thanks, Rona

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Rona F | @ronaf | Nov 7, 2017
In reply to @dmarks "Who is your primary care ID dr. Have you tried to go to national jewish health..." + (show)
@dmarks

Who is your primary care ID dr. Have you tried to go to national jewish health hospital for an evaluation?? How can the Dr. advise you on meds if they can't determine what type of MAC? maybe i need to reread you first email and that it is identified.

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I'm not sure who you're asking here? This is Rona, who's going to meet Dr. Mitchell. My Doc at Stanford, Dr Ruoss, had me tested over a year ago w. 3 sputum cultures and a 6 week wait of culturing it out, to determine which MAC I have. It's intracellulare. I assumed that's how he figured what drugs to put me on.

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Rona F | @ronaf | Nov 7, 2017
In reply to @dmarks "I have MAC as well and was treated with the big three and could not tolerate..." + (show)
@dmarks

I have MAC as well and was treated with the big three and could not tolerate ethambutol so my dr. put me on Azithromycin, Rifampin, and inhaled Amikacin. This was effective and got me into remission yet I again tested positive soon after. One drug cannot treat MAC and to put you on that may cause you to become drug resistant. I would find another Dr.

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Yes, I understand the meds need to be taken together. I've been on the meds for 14 months. I do sputum tests every month. I'm not sure what you mean by "determine exactly what germ it is". The MAC I have is intracellulare. (not sure of the spelling).

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Rona F | @ronaf | Nov 7, 2017
In reply to @sophie1019 "Hi I was diagnosed with MAC. I am on rifampin, azthromycin and moxifloxcin. Plus I have..." + (show)
@sophie1019

Hi I was diagnosed with MAC. I am on rifampin, azthromycin and moxifloxcin. Plus I have a pic line inserted..I feel good, but want to come off some of these meds.

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Thanks Windwalker, I heard from dmarks. I hope there are more people out there who've gone through surgery successfully or not, that can reply to me. I'd be very interested in hearing about people's experiences. If they've remained MAC free or didn't need treatment again after surgery. Is there another way for me to post this question? I'm still not sure I'm using this chat line correctly. Rona

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Jo Ann K | @jkiemen | Nov 7, 2017
In reply to @dmarks "I have MAC as well and was treated with the big three and could not tolerate..." + (show)
@dmarks

I have MAC as well and was treated with the big three and could not tolerate ethambutol so my dr. put me on Azithromycin, Rifampin, and inhaled Amikacin. This was effective and got me into remission yet I again tested positive soon after. One drug cannot treat MAC and to put you on that may cause you to become drug resistant. I would find another Dr.

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I do not cough anything up either no matter what they have tried. Have you asked if they think you have Pleurisy from coughing?

Jo Ann Ki 
 

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cowgirlmt | @cowgirlmt | Nov 7, 2017
In reply to @dmarks "I have MAC as well and was treated with the big three and could not tolerate..." + (show)
@dmarks

I have MAC as well and was treated with the big three and could not tolerate ethambutol so my dr. put me on Azithromycin, Rifampin, and inhaled Amikacin. This was effective and got me into remission yet I again tested positive soon after. One drug cannot treat MAC and to put you on that may cause you to become drug resistant. I would find another Dr.

Jump to this post

@jkiemen They suspected that I had pleurisy back in the early part of June.. Still saying that my chest tightness and pain is currently pleurisy.

REPLY
cowgirlmt | @cowgirlmt | Nov 7, 2017
In reply to @dmarks "Who is your primary care ID dr. Have you tried to go to national jewish health..." + (show)
@dmarks

Who is your primary care ID dr. Have you tried to go to national jewish health hospital for an evaluation?? How can the Dr. advise you on meds if they can't determine what type of MAC? maybe i need to reread you first email and that it is identified.

Jump to this post

@dmarks I have been seeing a Dr Steven Crider. I was told it is intracellulare...

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 7, 2017
In reply to @sophie1019 "Hi I was diagnosed with MAC. I am on rifampin, azthromycin and moxifloxcin. Plus I have..." + (show)
@sophie1019

Hi I was diagnosed with MAC. I am on rifampin, azthromycin and moxifloxcin. Plus I have a pic line inserted..I feel good, but want to come off some of these meds.

Jump to this post

Hi @ronaf
You may wish to review these discussions thread as well
- Question regarding lung surgery https://connect.mayoclinic.org/discussion/question-regarding-lung-surgery-240dd3/
- MAC and NTMs with Cavities https://connect.mayoclinic.org/discussion/mac-and-ntms-with-cavities/

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