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 10, 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 Jo Ann, have you worked in the medical field for many years? I am finding that a very large percentage of the people on our site and are infected; were health care workers. @cemcflc, I gardened a lot also, but I believe I caught mine from repeated use of a hot tub.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 10, 2017
In reply to @cemcflc "What is the difference between MAC disease and bronchiecstasis? Also my mom has several nodules in..." + (show)
@cemcflc

What is the difference between MAC disease and bronchiecstasis? Also my mom has several nodules in her lower. Does that make a difference rather than just 1 nodule? Also how do they determine if it's cancerous?

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@cemcflc Nodules are common in this type of infection. They don't always occur, and they sometimes disappear after treatment. The CT scan will be more revealing of what is going on in your mom's lungs. Somehow, doctors can tell it nodules appear cancerous by the scan, when in doubt, they do a biopsy. Bronchiectasis is a structural lung disease that can, but not always progress. MAC is a bacteria in the environment, it is everywhere. When people have a lung disease, it leaves them open to catching MAC and other types of infections. People with weak immune systems are also suseptible to getting MAC.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 12, 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, It sounded like it could be pleurisy to me. I have had that before. Every breath hurts.

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cemcflc | @cemcflc | Nov 12, 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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Hi, Wind Walker. My name is Angela and my mother's name is Barb. I can't tell you how much I appreciate your lengthy feedback and kindness. I spoke to a scientist named doctor Chris Miller from Canada and he is working with a prominent just on clinical trials that involve the inhalation of nitric oxide which has shown significant success with cystic fibrosis patients. We are intrested and seen what those clinical trials show at the end of January. They have not yet been approved yet in the US. I am going to take a look at the other forum that you mentioned on this site and am hopeful my mother's doctors will be able to determine exactly what type of antibioics she needs to take. Thank you once again.

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cemcflc | @cemcflc | Nov 12, 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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...prominent pulmonologist; not just

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cemcflc | @cemcflc | Nov 12, 2017
In reply to @ling123 "The bacteria that cause MAC infections can be commonly found in water and soil. So it..." + (show)
@ling123

The bacteria that cause MAC infections can be commonly found in water and soil. So it is possible that your mom has inhaled the bacteria while gardening. It is also possible that she got them from water. I don't believe contracting MAC infection has anything to do with pollutions, though. MAC is a group of bacteria that are so prevalent almost anybody could have them in their bodies. But most people are not affected by them. Only those who have pre-existing lung illness or weakened immune system are likely to have the infections from them. Many of us in this group who have had MAC infections also have bronchiectasis and many others have compromised immune system due to different health problems. You didn't mention if you mom has had any lung disease or has had illnesses that may have caused her immune system to weaken. If she has had any of these health problems, MAC infection could very well be the result of that.

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@ling123 Thank you so much for your feedback. It's greatly appreciated. My mom has no illnesses. That's why we just don't understand how she contracted MAC. She was a perfectly healthy 69 year old. She's never smoked and has always eating very healthy and is still very active although she now must use an inhaler and gets fatigued very easily. She's also been having abdominal pains and issues with her gastrointestinal track for the last year.

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cemcflc | @cemcflc | Nov 12, 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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@windwalker One thing I forgot to mention is that she does have gastric reflux, And she often chokes when drinking water or eating food. She also has a terrible cough now. See coughs up a lot of phlegm.

REPLY
unicorn | @unicorn | Nov 12, 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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Hi I was accepted for Doctor Miller's nitric oxide experiment, but have to move to
Vancouver Canada for 3 weeks. One of the side effects is internal bleeding, possible, that scared me. I also don't know what to do with my big dog. I'll talk to my doc about it. It's 3 weeks of treatment in the hospital, one hour of breathing 3 times a day of the nitric oxide. They provide lunch but you have to get own place.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 12, 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.

Jump to this post

@cemcflc , Angela, gastric reflux, also known as GERD is quite common with this disease. Many doctors speculate that it is the cause of bronchiectasis, which is susceptible to MAC. Some folks get MAC without the bronchiectasis as well. Coughing up phlegm is good to do because it is getting it out of the lungs. Once she gets on some kind of antibiotics, her cough should lessen or even go away. I had choking issues too whenever I would eat. I had my throat widened two years ago during a routine endoscope procedure. They said I would need this done every few years. I am beginning to choke again, so it probably is time to do it again. It is so nice afterwards to be able to swallow normally. Has your mom ever had this done?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 12, 2017

@cemcflc , Angela, it is very important that your mom has a specialist that knows how to treat mac. She/you should request a hard copy of the lab results; not just the one saying it is positive. You need the ones that specify what SPECIE of mac she has, and also make sure a suseptibiliy test was run on her sputem samples. That test will tell which antibiotics work on her bacteria. The mistake many doctors make that aren't that knowledgeable in treating mac; is that they don't also order a suseptibility test and just willy nilly prescribe a broad spectrum antibiotic. You don't want to be taking an antibiotic that cannot do her any good if that particular bacteria is resistant to it. You want to ask the doctor how many colonies were found as well. That will give you an idea of the severity of the infection. For example, one of my labs came back saying I had 5 colonies growing in the dish. Some people have hundreds! It is a good idea to keep that hard copy of her lab work in it's own file folder, and add future ones to it. That will become invaluable to her in the future. Especially if she changes doctors.

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