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.

Jo Ann K | @jkiemen | Nov 9, 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 did allot of gardening before I got it.  I have had both types of CT. I think the Hi Res showed more than the regular.
 

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 10, 2017
In reply to @unicorn "Hi Windwalker, no not better, feel a lot worse. Not taking any pills. Trying to keep..." + (show)
@unicorn

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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@unicorn, Christa, are you doing ANYTHING at all? Not even saline
inhalations? I hope you know how serious the repercussions can be of not doing
anything at all. This type of infection can consume you if not careful. It can
progress to a point of no return. Will you please pm me about recent sputem test
results and anything else that might be helpful for me to help advocate with
you? Do you know if you are currently colonized with a particular bacterium?
Please, please, respond. Hugs - Terri
 

REPLY
unicorn | @unicorn | Nov 10, 2017
In reply to @unicorn "Hi Windwalker, no not better, feel a lot worse. Not taking any pills. Trying to keep..." + (show)
@unicorn

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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Hi Terri: I'm doing saline and swimming, but it is getting worse. I will see doc in a few weeks and maybe we can come up with a plan. I know one lady on site took one drug only for a month, then another. I'm going to ask about that. I dont know what type of bug, but will find out. There seem to be a lot more options than the ones I.ve been offered. The big 3 are not tolerable. Anyway, hanging in, CT scan monday. Thank you for the support xo Christa

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 10, 2017
In reply to @unicorn "Hi Windwalker, no not better, feel a lot worse. Not taking any pills. Trying to keep..." + (show)
@unicorn

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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@unicorn , Christa, that lady that was taking one drug on alternating months was me! Please check your pm box, I have a message for you.

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unicorn | @unicorn | 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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Hi cemcfic: My sister in law loves to garden, though not every day, and she was just diagnosed with Mycobacterial gordoni, which is from the soil. It is not as dangerous as mycobacterial avium but interesting that your mom gardens. She should definitely wear a mask from now on when gardening. Interesting that she lived in area high with farming pollutants. Monsanto is the devil, killing us all. Anyhoo,
She should keep exercising, and trying to hawk up all the sputum she can. so less secpndary infections xo

REPLY
unicorn | @unicorn | Nov 10, 2017
In reply to @unicorn "Hi Windwalker, no not better, feel a lot worse. Not taking any pills. Trying to keep..." + (show)
@unicorn

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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hey
Terri what's a pm box?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 10, 2017
In reply to @unicorn "Hi Windwalker, no not better, feel a lot worse. Not taking any pills. Trying to keep..." + (show)
@unicorn

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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@unicorn Christa, the nitric oxide treatment in Canada is still in clinical trials. You would have to sign up to participate if the trial is still taking people in. It is not a good idea to do nothing when you are seriously ill. You could die waiting for future treatments that are not available yet. That is just my opinion.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 10, 2017
In reply to @unicorn "Hi Windwalker, no not better, feel a lot worse. Not taking any pills. Trying to keep..." + (show)
@unicorn

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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@unicorn, Christa, a pm box is your private email on connect that only you & I can see. To get there, click on your @unicorn that will bring up your Connect account along with your picture. To the right of your pic it will say 'private message' I believe it is highlighted in blue. Let me know if you have trouble getting there.

REPLY
ling123 | @ling123 | Nov 10, 2017
In reply to @unicorn "Hi Windwalker, no not better, feel a lot worse. Not taking any pills. Trying to keep..." + (show)
@unicorn

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

Jump to this post

@unicorn If you look at the menu bar on top of your screen, you should see a few symbols on the right. The one showing an envelope is what you should open. When your mouse hovers over it, it should show Private Messages.

REPLY
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.

Jump to this post

@cemcflc , Hello, and welcome to our group. Do you have a first name? I am sorry for your mother's diagnosis. MAC is found everywhere, so it would be impossible to know where she picked it up specifically. The two things you mentioned are good possibilities. Potting soil holds the highest concentrations of harmful bacteriums, billions per teaspoon. (I will not go near the stuff any more) The pollution could have done damage; your mom may have bronchiectasis, a lung condition that is prone to MAC. Incidentally, IF she does have bronchiectasis, she may have gotten that from the pollution, or could be genetic. Most cases of MAC can be traced back to your own drinking water. There are postings on this blog site under the main heading of 'MAC/bronchiectasis' that lists topics. You can go there and read about how people can contract this disease and also how to avoid reinfection. MAC isn't always a super serious infection, but it can easily turn into one and become life threatening. You and your mom would do well to educate yourselves as much as possible on this. A good source for info is to read posts by @katemn. I am glad that you found us, this group is a wonderful source for support and information. Please feel free to ask questions or share your mom's experiences in dealing with this. We are here for you.

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