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.

@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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Yes I have worked in the medical field since at least 1974. We have started to see patients in the hospital with MAC so I hope the Nitric Oxide treatment works

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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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Let me know how it goes. I also got an email from him. He said if I could not produce sputum, I would not qualify because that would need to be tested.  I was disappointed. Maybe if several of the group gets it they could share living expenses for the 3 weeks.
 
 

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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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jkiemen What a great idea!!! I would be a lot less scared if I wasn't alone, and with some of you. Can't you just hawk up sputum like a teenager? (I raised 2) It can be taught. I've gotten so much worse in a year, I feel if I wait another yearand get flu or something that I would not make it. Still can move , in good shape, but lungs feel Bad. Be fun to eat and shop together, if we didn't feel too bad. . xo Christa

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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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@unicorn
Thats great that you are accepted into the trial, please keep us informed how everthing goes.
Fingers crossed that it does the trick for you.
Im doing better now and the last three sputums were negative but want to keep the nitric oxide treatment in my back pocket so to speak just in case anything changes.
Best wishes!
Shari

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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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@pfist, Hi Shari! That is music to my ears that your last three sputems came back negative! I remember you said that you had declined taking antibiotics. Did you take any at all, or did the abscesses go away on it's own?

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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 My primary stopped all my antibiotics end of last week. I am still doing daily breathing treatments, and using my Breo. That seems to help with the coughing.. I actually am feeling a little better since stopping all the medications. He thinks since I have issues with medications that I was having more side effects, than the medicine actually helping me.. We will see how all this works out; just hoping I can stay healthy since it is now flu season :/ We got all my records in, and my sputum tested positive, but from the lung biopsy he says that it showed negative. So with the lung biopsy negative, and all my xrays clear he says I don't need to be on medications. However he says if I want we can find another infectious disease doctor.. I just have no idea what to do.. Is this something that I need to follow up on or just trust my primary and keep up with my breo and breathing treatments..

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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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@cowgirlmt, Kimmy, I am so glad to hear that you are improving. You had me very worried. I am no doctor, so I cannot advise you what to do. I would think that a lung biopsy trumps a sputem test. You know, you may have just still been feeling lousy from the pneumonia. It takes a long time to totally get over that. Question, what did your last CT scan show? Did you have a flu shot this fall? If you continue to improve, stay vigilant on staying healthy. You may want to have an Infectious Disease doc lined up for the future so that you have a plan in place in case you become seriously ill again. Are you taking Singulair by any chance?

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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 know, I don't want to get worse.  I have had to have bronchoscopies to get the sputum and culture.  I was disappointed but perhaps if we can put the word out to the group others would qualify.  I guess they need 10 initially. I am also afraid of being
around people with colds and viruses.  Getting paranoid. Can you post to us how it is going when you are in progress?  I read over the consent form and I know it seemed a little scary but they are required to put any potential even is rare side effect in the
form. I had to write forms in my job in the past and to get them approved by the Institutional Review Board it has to be very detailed.

I felt when he said I would not qualify, it made me feel like I will be stuck with the 3 antibiotics that seem to be harder on the body.

 
 

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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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Hi Cowgirl: same here, all medications stopped because of side effects. i tested positive also. It has been a year and I no longer fvery good. Thank god I haven't gotten sick! I know the bacteria is growing, I can feel it, so I might to the canadian trial with nitric oxide...maybe. xo

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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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@windwalker
My Pulminologis and Infec disease Dr's said if I wanted to take them they would prescribe antibiotics. They did not push for them because my last Ct in May had improved from the previous one. I had been testing positive for over a year and feeling really lousy short of breath and no energy.
My diagnosis was the bad one mycobacteria abcessus.
The treatment was up to three years starting out on iv's for 6 weeks. Truly the treatment sounded as bad as the disease.
But i wanted to breath again. I was going to try anything to try not have to do the antibiotics.
My pulminologist prescribed an airway clearance vest in January and he did a brochialscope to wash out the lungs in August. The vest I do twice a day for half hour while doing my saline nebulizer. Afterwards I am able to produce a lot more sputum.
The vest was expensive but Medicare covered 70% of the cost.
I also am doing Criptolepsis and Biden two herbs which I found out about in the book ~ Herbal Antibiotics by Stephen Bruhner.
So not sure what did the trick but I think it was a combination of all three of these.
The pulminologist said he would do the brochialscope washes 3-4 times a year if needed. If I stay neg doesn't think it's needed.
I plan to keep doing these three changes and not changing anything.
The herbs have had no neg effect and I believe they are a big part also. When I get a cold now I never get a sinus infection while talking these and use to get bad ones. Plus my phlem doesn't turn green with colds now either.
I hope this info helps anybody, even if your already taking antibiotic these things could be added to help your odds of beating this disease.
In the mean time let's hope and pray that scientist figure out some therapy's that are not as invasive has the the antibiotics seem to be.
How are you doing Terri?
Take care
Shari

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