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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 13, 2017
In reply to @cemcflc "My mother was recently diagnosed with MAC disease. I'm curious about the hobbies such as gardening..." + (show)
@cemcflc

My mother was recently diagnosed with MAC disease. I'm curious about the hobbies such as gardening or working in soil quite often or working in an area were there were many pollutant facilities such as Monsanto, grain processing plans, power companies, etc. She is a 69 year old white female and very thin. She's never smoked a cigarette in her life, she is very active, and she has not been diagnosed with any other diseases. She simply went in for an outpatient surgery and was required to have a chest X-ray before getting surgery and that's when they discovered it. She had a sputum test last week, and we are waiting 2 weeks for the doctor to explain the results to us. They said they wanted to delay her appointment, so they can let the culture sit a bit longer before they can determine what course of antibioics she should take. We are just trying to figure out what may have caused this as she Was a distance runner and worked for 20 years in a very polluted area of the Midwest Where several companies have been fined billions of dollars were such. We are also concern that she may have obtained it from gardening her entire life and working with soil. Thank you so much for your feedback. It's greatly appreciated.

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@jkiemen , Hi Jo Ann. You are aware of getting your eyes and liver checked on a regular basis, right? Also, get that flu shot every fall. We absolutely must be aware of being around persons who have colds, especially in the winter months. I take extra precautions when in public places. For example I grab door handles at the bottom where people rarely grab it. You can tell by the wear of the finish where most people grab. If I am going through a door at a store that other people are holding open just long enough for me to hold it myself; then I reach up high on the door frame and grab it there (not many people reach high to hold the door). Avoid buffet style dining out, think of the many hands touching the handles, ewe! Always use the wipes on the grocery cart handles. Wash your hands a lot, especially after you get home. That is the first thing I do EVERY time I arrive home. We are not germaphobes, bacteria is everywhere, and heavily concentrated in certain places. Just need to be mindful. If you find that you cannot tolerate the BIG 3 antibiotics, seek out alternatives. Word has it, new drugs should be coming out on the market in the near future to treat MAC.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 13, 2017
In reply to @cemcflc "My mother was recently diagnosed with MAC disease. I'm curious about the hobbies such as gardening..." + (show)
@cemcflc

My mother was recently diagnosed with MAC disease. I'm curious about the hobbies such as gardening or working in soil quite often or working in an area were there were many pollutant facilities such as Monsanto, grain processing plans, power companies, etc. She is a 69 year old white female and very thin. She's never smoked a cigarette in her life, she is very active, and she has not been diagnosed with any other diseases. She simply went in for an outpatient surgery and was required to have a chest X-ray before getting surgery and that's when they discovered it. She had a sputum test last week, and we are waiting 2 weeks for the doctor to explain the results to us. They said they wanted to delay her appointment, so they can let the culture sit a bit longer before they can determine what course of antibioics she should take. We are just trying to figure out what may have caused this as she Was a distance runner and worked for 20 years in a very polluted area of the Midwest Where several companies have been fined billions of dollars were such. We are also concern that she may have obtained it from gardening her entire life and working with soil. Thank you so much for your feedback. It's greatly appreciated.

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@pfist, Shari, thank you for sharing that info. I will look into those herbs you spoke of. I am glad that you are faring so well without the antibiotics. I hope you will continue to thrive and keep us in the loop. Hugs, Terri

REPLY
Jo Ann K | @jkiemen | Nov 13, 2017
In reply to @cemcflc "My mother was recently diagnosed with MAC disease. I'm curious about the hobbies such as gardening..." + (show)
@cemcflc

My mother was recently diagnosed with MAC disease. I'm curious about the hobbies such as gardening or working in soil quite often or working in an area were there were many pollutant facilities such as Monsanto, grain processing plans, power companies, etc. She is a 69 year old white female and very thin. She's never smoked a cigarette in her life, she is very active, and she has not been diagnosed with any other diseases. She simply went in for an outpatient surgery and was required to have a chest X-ray before getting surgery and that's when they discovered it. She had a sputum test last week, and we are waiting 2 weeks for the doctor to explain the results to us. They said they wanted to delay her appointment, so they can let the culture sit a bit longer before they can determine what course of antibioics she should take. We are just trying to figure out what may have caused this as she Was a distance runner and worked for 20 years in a very polluted area of the Midwest Where several companies have been fined billions of dollars were such. We are also concern that she may have obtained it from gardening her entire life and working with soil. Thank you so much for your feedback. It's greatly appreciated.

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I certainly hope so, have you any insight into the new drugs?
 
 

REPLY
Jo Ann K | @jkiemen | Nov 13, 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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Can you tell me about what your side effects were?
 
 

REPLY
cowgirlmt | @cowgirlmt | Nov 13, 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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@windwalker I am glad that I am finally feeling better, I just hope this lasts, I still have all the antibiotics in my system.. So give it about a week and see how I feel then.. lol This has been a very long process, I had the pneumonia back in May. I haven't had a repeat CT since they had admitted me first part of June. I have had many xray's but no CT. I am thinking that I need to have a repeat done. I received the flu/prevnar23.. I am wondering if moving to a drier climate would also be better for my health.. I have Singulair as a rescue inhaler; but it doesn't seem to help at all..

REPLY
ling123 | @ling123 | Nov 13, 2017
In reply to @cemcflc "My mother was recently diagnosed with MAC disease. I'm curious about the hobbies such as gardening..." + (show)
@cemcflc

My mother was recently diagnosed with MAC disease. I'm curious about the hobbies such as gardening or working in soil quite often or working in an area were there were many pollutant facilities such as Monsanto, grain processing plans, power companies, etc. She is a 69 year old white female and very thin. She's never smoked a cigarette in her life, she is very active, and she has not been diagnosed with any other diseases. She simply went in for an outpatient surgery and was required to have a chest X-ray before getting surgery and that's when they discovered it. She had a sputum test last week, and we are waiting 2 weeks for the doctor to explain the results to us. They said they wanted to delay her appointment, so they can let the culture sit a bit longer before they can determine what course of antibioics she should take. We are just trying to figure out what may have caused this as she Was a distance runner and worked for 20 years in a very polluted area of the Midwest Where several companies have been fined billions of dollars were such. We are also concern that she may have obtained it from gardening her entire life and working with soil. Thank you so much for your feedback. It's greatly appreciated.

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Besides the flu shot, people with our conditions should also get the Pneumococcal vaccination.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 13, 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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@cowgirlmt, Singulair are pills, not an inhaler. CT scans should only be done once a year max, they are powerful and do damage to cells. So use sparingly. Stay well!

REPLY
cowgirlmt | @cowgirlmt | Nov 13, 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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@unicorn Medications are so harsh sometimes.. I tried taking them, but the Big 3 actually landed me in the hospital because of severe side effects.. I am glad to hear that you haven't gotten sick! I keep thinking that it is all in my head; I have never been sick and now this is just an ongoing battle. lol Have to stay positive, another reason I am thinking of moving. So I can be closer to my family and friends for support. But at the same time, it will be more difficult to find healthcare options.

REPLY
unicorn | @unicorn | Nov 13, 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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cowgirl, yes meds are fierce! Even my vision went south, but since stopping them I have gotten worse. Waiting to hear back from nitric oxide trials

REPLY
cowgirlmt | @cowgirlmt | Nov 13, 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

Wrong med, sorry very insane day.. haha.. I was on Singulair for about 3 months; but they stopped cause didn't notice any changes. I had 2 CT's within 2 1/2 weeks when I was admitted the 2 different times. First was clear, the second one showed the spot on my lung.. Just worries me, that can be growing. I was told not to worry about the infection getting worse as long as xray comes back clear.. At the same time with my pneumonia, xray didn't really show, and CT did.. So I am just in a holding pattern it feels like.

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