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cowgirlmt
@cowgirlmt

Posts: 36
Joined: Nov 03, 2017

Treatment Option

Posted by @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.

REPLY

Hi I was diagnosed with MAC. I am on rifampin, azthromycin and moxifloxcin. Plus I have a pic line inserted..I feel good, but want to come off some of these meds.

@sophie1019

Hi I was diagnosed with MAC. I am on rifampin, azthromycin and moxifloxcin. Plus I have a pic line inserted..I feel good, but want to come off some of these meds.

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Do you have any suggestions for staying healthy and positive? I moved to Louisiana from Montana for work. I am here alone, and it has been a difficult few months for me. I work in the medical field, so am constantly exposed to sickness, and long work hours. I have tried so many things to help with energy, control pain and nothing seems to help.

@cowgirlmt , Hello there, and welcome to our support group. Do you have a first name that you would prefer to use? What do you do exactly for work in the medical field? I can tell you that a large percentage of the MAC infected people on this site were nurses or other healthcare workers. I feel there is a correlation there. If you work in a large facility, then you may want to switch your career to a smaller venue like private doctor’s offices. That would give you less exposure to the germs that are in the larger hospitals. I am wondering if you have ever had your immune system tested? Where & why are you having pain?

@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?

@windwalker

@cowgirlmt , Hello there, and welcome to our support group. Do you have a first name that you would prefer to use? What do you do exactly for work in the medical field? I can tell you that a large percentage of the MAC infected people on this site were nurses or other healthcare workers. I feel there is a correlation there. If you work in a large facility, then you may want to switch your career to a smaller venue like private doctor’s offices. That would give you less exposure to the germs that are in the larger hospitals. I am wondering if you have ever had your immune system tested? Where & why are you having pain?

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@windwalker thank you so much for taking the time to read my post. I go by Kimmy 🙂 I currently work for a small rural hospital and clinic. I have never had my immune system tested.. I have a constant tightness in the right side of the chest, when there is a flare up it radiates down my right side; breathing becomes labored, lightheaded, and dizzy. I called my doctor and he said that at this point it is to early to see any changes in regards to my symptoms.
I have been asking many questions! That is the only way I can understand what is going on. I am sensitive to medications so worried about long-term usage.

@windwalker

@cowgirlmt , Hello there, and welcome to our support group. Do you have a first name that you would prefer to use? What do you do exactly for work in the medical field? I can tell you that a large percentage of the MAC infected people on this site were nurses or other healthcare workers. I feel there is a correlation there. If you work in a large facility, then you may want to switch your career to a smaller venue like private doctor’s offices. That would give you less exposure to the germs that are in the larger hospitals. I am wondering if you have ever had your immune system tested? Where & why are you having pain?

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@cowgirlmt, You are welcome Kimmy. Do you work in ICU units by any chance? Have you asked your doctor how many MAC/bronchiectasis patients they have treated? It is said that you should see someone who has treated at least 12 patients. Is this a private practice physician you are seeing? Also, I used to drink a tea called ‘Breathe Easy’ by Tradition Medicines. You can Google it. Krogers sells it in the natural food isle. (not the coffee and tea isle. This tea helps a lot with loosening that tight feeling. It worked for me anyway.

@sophie1019

Hi I was diagnosed with MAC. I am on rifampin, azthromycin and moxifloxcin. Plus I have a pic line inserted..I feel good, but want to come off some of these meds.

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@cowgirlmt, Kimmy, you had asked how to stay healthy and positive….there is info on how to try to stay infection free. I will see if I can dig some links out for you to visit. Have you had time to research this at all? I know you work long hours and are probably exhausted, but it would be a good idea to learn all that you can because this disease can be very complicated. For right now, getting rest and eating healthy foods, and exercise will go a long way to help stay healthy. As far as staying positive, I believe you will feel more positive after your meds have kicked in and the infection is knocked down. For right now, allow yourself to rest and don’t beat yourself up over it.

@sophie1019

Hi I was diagnosed with MAC. I am on rifampin, azthromycin and moxifloxcin. Plus I have a pic line inserted..I feel good, but want to come off some of these meds.

Jump to this post

Hi Windwalker, I’d be interested also in any information on how to stay healthy & positive. I must admit, I haven’t kept up w. this chat line much. Sometimes because there is just too much information. And also because I was traveling. In any case, Glad it’s here.
Also, it does seem different doctors put people on different drugs. This disease seems very individualized depending on many factors. You mentioned your Doc didn’t want to put you on azithromycin. I was diagnosed in the spring of 2016 & put on azithromycin, rifampin, & ethambutol. Plus, because I have cavitary lung disease also; i.e. a cavity on the left side of my lung caused by the MAC bacteria, I was put on 5 months 3x a week of amikacin. Now I’m on not only the 3 orals, but also inhaled amikacin and the drug clofazamine will soon be added. Geesh!! It’s a lot of drugs. Fortunately, I have a very Doc at Stanford in CA. who’s not only a lung Doc., he’s also an infectious disease Doc. A week from Monday, I’m flying to Colorado to meet Dr. John Mitchell, a surgeon who specializes in lung surgery. My Doc at Stanford things surgery & the removal of the cavity may lessen my chances of the MAC reoccurring. I’ll learn more once I meet Dr. Mitchell. This disease is quite involved. I look forward to the time when I’ll be off the drugs. Anyway, this is a lot of information. I’m wondering if there’s anyone out there who’s had lung surgery for the MAC? If so, I’d be happy to hear from you. Rona

@windwalker

@cowgirlmt , Hello there, and welcome to our support group. Do you have a first name that you would prefer to use? What do you do exactly for work in the medical field? I can tell you that a large percentage of the MAC infected people on this site were nurses or other healthcare workers. I feel there is a correlation there. If you work in a large facility, then you may want to switch your career to a smaller venue like private doctor’s offices. That would give you less exposure to the germs that are in the larger hospitals. I am wondering if you have ever had your immune system tested? Where & why are you having pain?

Jump to this post

I don’t work in an ICU; just a small rural hospital. In my clinic we have treated no one, I am the first one for it lol. I am seeing my primary where I work, but then go out of town to see 2 different specialist. I have started using different essential oils in my home, which helps a little bit.

@sophie1019

Hi I was diagnosed with MAC. I am on rifampin, azthromycin and moxifloxcin. Plus I have a pic line inserted..I feel good, but want to come off some of these meds.

Jump to this post

@windwalker Thank you so much for all the information, responding, and taking the time out of your day. I greatly appreciate it! I have had some time, trying different things. I am hoping that my energy comes back, working extremely long hours. And we are in the middle of a transition for a new system, and I am the go to person for all the clinics, nurses, and providers. So down time doesn’t exactly happen for me.. Always things going on, and not much down time. I try and exercise, but is very painful in regards to breathing, and start blacking out. So at this moment just doing stretches, but still not the same.

@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?

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@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..

@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?

@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?

@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?

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

@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?

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@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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