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.

@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 , Didn't you say in an earlier post that you were diagnosed with the intracellular type of mac?

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@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 was told by my pulmonologist and infectious disease doctors that it was the intracellular.

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Hi Windwalker, no not better, feel a lot worse. Not taking any pills. Trying to keep sputum low, but not curing anything. Ct scan in 2 weeks, not sure what doc will do. I am hoping to hang on until nitric oxide is approved, may go to Canada if not approved here, or Israel! No blood lately, but tough to breath, at night when tired. I think this ct scan will show significant damage...but what can u do? Maybe fly out to National Jewish...xo

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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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@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'm most intrested in learning from all of you if you worked with soil a lot, worked in a city with lots of pollutants in the air, and what area within the US that you are from.... In addition to any other valuable feedback we could use when speaking with her doctor. Lastly did any of you have a high resolution CT scan; rather than just a regular CT scan? From what I read on Mayo clinic they recommend a high resolution CT scan. Thank you, once again.

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@jkiemen

Where are the pains you are having?

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My mother was just diagnosed with Mac and has the same issues with pain in her abdomen that is sporadic.

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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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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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@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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Here is some information about MAC: https://www.webmd.com/hiv-aids/guide/aids-hiv-opportunistic-infections-mycobacterium-avium-complex#1
And here is some information about bronchiectasis: https://www.nhlbi.nih.gov/health/health-topics/topics/brn
When you have bronchiectasis, the condition makes it easy for bacteria to be trapped in thick mucus causing infections like MAC.

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@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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I had a biopsy. To check. I know the whole thing is scary
 
 

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