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.

cowgirlmt | @cowgirlmt | Nov 6, 2017
In reply to @windwalker "@cowgirlmt , Being in a medical field, I am sure you know to learn all that..." + (show)
@windwalker

@cowgirlmt , Being in a medical field, I am sure you know to learn all that you can about your disease and treatment. Ask your doctors lots of questions. Please take the time to read past posts to learn more about other's experiences with this disease. A good person to read behind is @katemn. She has left us a treasure trove of good info. Please be aware that doctors are divided on how to treat this disease. For example: my doctor at the Mayo clinic does not want me to ever take azithromycin because it is one of the more powerful drugs. He does not want my MAC to build up a resistance to it over time, because MAC usually comes back later in your life and you don't want to run out of options for treatment. Mind you, that is MY doctor's opinion, and there are members that went on the same treatment you are on and seem to be free of the MAC for years. Have you reported back to your doctor that you are still feeling so rotten?

Jump to this post

@windwalker Yes ma'am I did contact my doctor Friday. I just got a response today and they are adding more antibiotics 🙁 Not sure about all this lol..

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 6, 2017

@ronaf and @cowgirlmt: I want to add my welcome to you both. I strongly urge you to read some of the other discussions in the MAC group https://connect.mayoclinic.org/group/mac-bronchiectasis/. You'll find some amazing first-hand accounts and information shared among members. Here are a few discussions to start with:

* NEWCOMERS .. ONE EXPLANATION I FOUND ON MAC/MAI TO HELP YOU https://connect.mayoclinic.org/discussion/newcomers-one-explanation-i-found-on-macmai-to-help-you/
* (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
* MAC antibiotics and side effects https://connect.mayoclinic.org/discussion/mac-antibiotics-and-side-effects/

CowgirlMT: I might suggest that you start a new discussion about "Staying Positive with MAC" What do you think?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 6, 2017

@cowgirlmt, you mentioned that you've started using essential oils. There is a related discussion in the Transplants group about this that you may wish to read:
* Use of essential oils for transplant patients https://connect.mayoclinic.org/discussion/use-of-essential-oils-for-transplant-patients/

In brief, it is recommended that you talk about the use of essential oils with your pulmonologist. When one is immunocompromised, it is best to check. How have you found the essential oils to have helped you?

REPLY
1 reply
cowgirlmt | @cowgirlmt | Nov 6, 2017
In reply to @colleenyoung "@ronaf and @cowgirlmt: I want to add my welcome to you both. I strongly urge you..." + (show)
@colleenyoung

@ronaf and @cowgirlmt: I want to add my welcome to you both. I strongly urge you to read some of the other discussions in the MAC group https://connect.mayoclinic.org/group/mac-bronchiectasis/. You'll find some amazing first-hand accounts and information shared among members. Here are a few discussions to start with:

* NEWCOMERS .. ONE EXPLANATION I FOUND ON MAC/MAI TO HELP YOU https://connect.mayoclinic.org/discussion/newcomers-one-explanation-i-found-on-macmai-to-help-you/
* (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
* MAC antibiotics and side effects https://connect.mayoclinic.org/discussion/mac-antibiotics-and-side-effects/

CowgirlMT: I might suggest that you start a new discussion about "Staying Positive with MAC" What do you think?

Jump to this post

@colleenyoung I could start a new discussion. For me personally having support, and a new outlook daily helps 🙂

REPLY
cowgirlmt | @cowgirlmt | Nov 6, 2017
In reply to @colleenyoung "@cowgirlmt, you mentioned that you've started using essential oils. There is a related discussion in the..." + (show)
@colleenyoung

@cowgirlmt, you mentioned that you've started using essential oils. There is a related discussion in the Transplants group about this that you may wish to read:
* Use of essential oils for transplant patients https://connect.mayoclinic.org/discussion/use-of-essential-oils-for-transplant-patients/

In brief, it is recommended that you talk about the use of essential oils with your pulmonologist. When one is immunocompromised, it is best to check. How have you found the essential oils to have helped you?

Jump to this post

@colleenyoung I have started using essential oils. I will call and leave a message with my pulmonologist, thank you. One that I mainly use is Eucalyptus at night, tends to help with my coughing and helps me fall asleep.

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Jo Ann K | @jkiemen | Nov 6, 2017

Where are the pains you are having?

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2 replies
cowgirlmt | @cowgirlmt | Nov 6, 2017
In reply to @jkiemen "Where are the pains you are having?" + (show)
@jkiemen

Where are the pains you are having?

Jump to this post

@jkiemen My pains are right side chest, down my ribs. I have pain daily, and nothing really helps. When I have a flare up goes to lower back and stomach.

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Jo Ann K | @jkiemen | Nov 6, 2017

I have had them too since I had a biopsy. There are times it is worse. So it acts as a constant reminder that the bacteria is/was present

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1 reply
cowgirlmt | @cowgirlmt | Nov 6, 2017
In reply to @jkiemen "I have had them too since I had a biopsy. There are times it is worse...." + (show)
@jkiemen

I have had them too since I had a biopsy. There are times it is worse. So it acts as a constant reminder that the bacteria is/was present

Jump to this post

@jkiemen I just don't understand how I am having pains this long after. Nothing seems to be helping.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 7, 2017
In reply to @windwalker "@cowgirlmt , Being in a medical field, I am sure you know to learn all that..." + (show)
@windwalker

@cowgirlmt , Being in a medical field, I am sure you know to learn all that you can about your disease and treatment. Ask your doctors lots of questions. Please take the time to read past posts to learn more about other's experiences with this disease. A good person to read behind is @katemn. She has left us a treasure trove of good info. Please be aware that doctors are divided on how to treat this disease. For example: my doctor at the Mayo clinic does not want me to ever take azithromycin because it is one of the more powerful drugs. He does not want my MAC to build up a resistance to it over time, because MAC usually comes back later in your life and you don't want to run out of options for treatment. Mind you, that is MY doctor's opinion, and there are members that went on the same treatment you are on and seem to be free of the MAC for years. Have you reported back to your doctor that you are still feeling so rotten?

Jump to this post

@cowgirlmt, I feel like taking cipro on top azithromycin is overkill and it does not sound right, but then, I am not a doctor. You may want to check with a GOOD doctor on that. Did they do a suseptibility test on your culture to see what would indeed kill that particular strain?

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