1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!

If you have the "MS Word" program on your computer:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal "file cabinet" on MAC/MAI!  Go to it!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

boomerexpert | @boomerexpert | Oct 17, 2017
In reply to @suenfl "I saw her two weeks ago while I was hospitalized. She is the one that raised..." + (show)
@suenfl

I saw her two weeks ago while I was hospitalized. She is the one that raised the ethambutol and rifabutin. Glad to hear that she is knowledgeable on MAC. Hopefully I will be able to be treated here in Tallahassee. Thank you!

Jump to this post

Work closely with her, letting her know how you're responding to the meds as it happens...if she's good, she'll listen and adjust them until you two find a treatment you can tolerate...if she isn't, find someone else.

REPLY
boomerexpert | @boomerexpert | Oct 17, 2017
In reply to @liangctoo "Hi all, I'm excited to have found this group. I am posting on behalf of my..." + (show)
@liangctoo

Hi all,

I'm excited to have found this group. I am posting on behalf of my mother who was diagnosed with MAI about 15 months ago, and she's been on antibiotics for 13 of of those months. She recently got pneumonia, was hospitalized, was taken off of those - as they gave her other things - and in the last month or so, has been home healing up. She's struggling with the disease and I'm not sure how to help her. If anyone has advice or insight to our questions, I'm thankful in advance:

- While she was on the antibiotics, prior to the pneumonia, she was generally not feeling great, but her health seemed to be stable.
- Since she came out of the hospital, her pulmonary doctor said she can discontinue the antibiotics. Her recent CT scan shows no additional changes from last year, which is good news I think. But is discontinuing the medicine typical?
- My mother feels weak, has no energy, and says she's very uncomfortable, more than before. Should she expect to feel better? She seems to be healing very slowly, even at times it seems she's gotten worse than before; it's hard to tell.
- My mother also has depression. It's hard for the family to tell how much of this is physical and mental, though I know the two are intertwined. I'm going to suggest she go to a therapist in addition to her psychiatrist visits (30 mins once a month).
- Has anyone had experience with an MAI specialist in New York City? I tried calling Mt Sinai (who I understand is now associated with National Jewish Health) but their generalized appointment hotline was not very helpful.

Thank you,
Charmaine

Jump to this post

I am a Counseling Psychologist by training. Your mother does indeed need to see a therapist...Psychiatrists are generally med writers only...do no therapy. That 30 minutes is for medication review only. Best, find a Psychologist who does both therapy and meds.

REPLY
nick52 | @nick52 | Oct 17, 2017
In reply to @laneyk "I have not posted in a while. I have been off the MAC meds for a..." + (show)
@laneyk

I have not posted in a while. I have been off the MAC meds for a year. I am doing well. My meds were not stopped until I had negative sputum results, twice. I continue to see Pulmonologist every three months and have a chest x-ray every visit. There have been no changes suggestive of return of MAC. I have scarring that never changes. I feel well and have regain the weight I lost. I hope this is encouraging to other MAC patients.

Jump to this post

That is great Laneyk

REPLY
nick52 | @nick52 | Oct 17, 2017
In reply to @liangctoo "Hi all, I'm excited to have found this group. I am posting on behalf of my..." + (show)
@liangctoo

Hi all,

I'm excited to have found this group. I am posting on behalf of my mother who was diagnosed with MAI about 15 months ago, and she's been on antibiotics for 13 of of those months. She recently got pneumonia, was hospitalized, was taken off of those - as they gave her other things - and in the last month or so, has been home healing up. She's struggling with the disease and I'm not sure how to help her. If anyone has advice or insight to our questions, I'm thankful in advance:

- While she was on the antibiotics, prior to the pneumonia, she was generally not feeling great, but her health seemed to be stable.
- Since she came out of the hospital, her pulmonary doctor said she can discontinue the antibiotics. Her recent CT scan shows no additional changes from last year, which is good news I think. But is discontinuing the medicine typical?
- My mother feels weak, has no energy, and says she's very uncomfortable, more than before. Should she expect to feel better? She seems to be healing very slowly, even at times it seems she's gotten worse than before; it's hard to tell.
- My mother also has depression. It's hard for the family to tell how much of this is physical and mental, though I know the two are intertwined. I'm going to suggest she go to a therapist in addition to her psychiatrist visits (30 mins once a month).
- Has anyone had experience with an MAI specialist in New York City? I tried calling Mt Sinai (who I understand is now associated with National Jewish Health) but their generalized appointment hotline was not very helpful.

Thank you,
Charmaine

Jump to this post

Hi liangctoo,

I know for a fact that St John’s Wort is very good for depression and it is a natural remedy but it can not be taken with other anti-depression med. Check it out!

I had a big pneumonia once and I was soooooo weak I could hardly walk. My sister gave me whey protein ISOLATE because i had no apetite and that was great to give me energy. I thought I was going to

die. It took me a good month to regain my energy.  I kept taking it forv3 months.  When you have a pneumonia you need good protein for healing so that can be taken with any medication because it is also a probiotic so if she takes antibiotic she needs to take

it 4 hours before or after.  

 Not too many doctors can give you advise for natural remedy but you can consult a naturopath or a natural nutritionist.  To me Whey Protein Isolate was a savior! My American sister come to Montreal

for Natural med consultation so she knew what she was doing. Good luck! If you live in Florida i’ll be there in december. I could visit your mom.  She needs a good supportive team.

Check it out!

REPLY
nick52 | @nick52 | Oct 17, 2017
In reply to @suenfl "I had quad-bypass in October 2015. When the drain tubes were removed they ruptured an artery..." + (show)
@suenfl

I had quad-bypass in October 2015. When the drain tubes were removed they ruptured an artery and I ended up in a coma. I came out ok, but spent 7 weeks in hospital. I kept telling Drs I had fever/sweats, joint pain, nausea, vomiting and other problems. They ignored me. Went to Drs all of 2016 until they dropped me saying nothing was wrong. In 2017 I started going to the hospital... same one that did surgery. 5x was diagnosed with pneumonia. Finally went to another hospital and they immediately diagnosed me with MAC using same lab reports from first hospital. put me on ethambutol, rfiabutin and azithromycin. After 9 weeks everything was still the same. raised antibiotics 2 weeks ago. Still very sick, not sure what to do.

Jump to this post

My specialist (infectiologue) says a lot of people have that bacteria without being diagnose so it is no use to over react but to be preventive to keep our lung healthy. Watch food that give lots of mucus and try to have a more alkaline diet then an acid diet.

 He says we only have people on antibiotic if the mac is giving issues.  I have not taken antibiotic since they did a bronco and the result was positive for MAC but I am doing well so far without medication.  Antibiotic weakens your immune system so be careful!

In french we say “ soyons vigilant” ! 

REPLY
nick52 | @nick52 | Oct 17, 2017
In reply to @suenfl "I had quad-bypass in October 2015. When the drain tubes were removed they ruptured an artery..." + (show)
@suenfl

I had quad-bypass in October 2015. When the drain tubes were removed they ruptured an artery and I ended up in a coma. I came out ok, but spent 7 weeks in hospital. I kept telling Drs I had fever/sweats, joint pain, nausea, vomiting and other problems. They ignored me. Went to Drs all of 2016 until they dropped me saying nothing was wrong. In 2017 I started going to the hospital... same one that did surgery. 5x was diagnosed with pneumonia. Finally went to another hospital and they immediately diagnosed me with MAC using same lab reports from first hospital. put me on ethambutol, rfiabutin and azithromycin. After 9 weeks everything was still the same. raised antibiotics 2 weeks ago. Still very sick, not sure what to do.

Jump to this post

Check the secondary effect on the web! Be careful with antibiotic according to my specialist it is not a sure cure for that bacteria.  If it makes you sicker something is really wrong .  You will need to read about all you take and feel to make better choices.

Good luck!

REPLY
liangctoo | @liangctoo | Oct 17, 2017
In reply to @liangctoo "Hi all, I'm excited to have found this group. I am posting on behalf of my..." + (show)
@liangctoo

Hi all,

I'm excited to have found this group. I am posting on behalf of my mother who was diagnosed with MAI about 15 months ago, and she's been on antibiotics for 13 of of those months. She recently got pneumonia, was hospitalized, was taken off of those - as they gave her other things - and in the last month or so, has been home healing up. She's struggling with the disease and I'm not sure how to help her. If anyone has advice or insight to our questions, I'm thankful in advance:

- While she was on the antibiotics, prior to the pneumonia, she was generally not feeling great, but her health seemed to be stable.
- Since she came out of the hospital, her pulmonary doctor said she can discontinue the antibiotics. Her recent CT scan shows no additional changes from last year, which is good news I think. But is discontinuing the medicine typical?
- My mother feels weak, has no energy, and says she's very uncomfortable, more than before. Should she expect to feel better? She seems to be healing very slowly, even at times it seems she's gotten worse than before; it's hard to tell.
- My mother also has depression. It's hard for the family to tell how much of this is physical and mental, though I know the two are intertwined. I'm going to suggest she go to a therapist in addition to her psychiatrist visits (30 mins once a month).
- Has anyone had experience with an MAI specialist in New York City? I tried calling Mt Sinai (who I understand is now associated with National Jewish Health) but their generalized appointment hotline was not very helpful.

Thank you,
Charmaine

Jump to this post

We will give the protein a try (as well as some of the other tips from everyone). Thank you for the kind, kind offer. We are in New York unfortunately.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 18, 2017
In reply to @laneyk "I have not posted in a while. I have been off the MAC meds for a..." + (show)
@laneyk

I have not posted in a while. I have been off the MAC meds for a year. I am doing well. My meds were not stopped until I had negative sputum results, twice. I continue to see Pulmonologist every three months and have a chest x-ray every visit. There have been no changes suggestive of return of MAC. I have scarring that never changes. I feel well and have regain the weight I lost. I hope this is encouraging to other MAC patients.

Jump to this post

@laneyk , Dear Elaine, thank you so much for that positive message. It is equally important that we hear the good news and wins with this disease. I wish you continued good health!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 18, 2017
In reply to @liangctoo "Hi all, I'm excited to have found this group. I am posting on behalf of my..." + (show)
@liangctoo

Hi all,

I'm excited to have found this group. I am posting on behalf of my mother who was diagnosed with MAI about 15 months ago, and she's been on antibiotics for 13 of of those months. She recently got pneumonia, was hospitalized, was taken off of those - as they gave her other things - and in the last month or so, has been home healing up. She's struggling with the disease and I'm not sure how to help her. If anyone has advice or insight to our questions, I'm thankful in advance:

- While she was on the antibiotics, prior to the pneumonia, she was generally not feeling great, but her health seemed to be stable.
- Since she came out of the hospital, her pulmonary doctor said she can discontinue the antibiotics. Her recent CT scan shows no additional changes from last year, which is good news I think. But is discontinuing the medicine typical?
- My mother feels weak, has no energy, and says she's very uncomfortable, more than before. Should she expect to feel better? She seems to be healing very slowly, even at times it seems she's gotten worse than before; it's hard to tell.
- My mother also has depression. It's hard for the family to tell how much of this is physical and mental, though I know the two are intertwined. I'm going to suggest she go to a therapist in addition to her psychiatrist visits (30 mins once a month).
- Has anyone had experience with an MAI specialist in New York City? I tried calling Mt Sinai (who I understand is now associated with National Jewish Health) but their generalized appointment hotline was not very helpful.

Thank you,
Charmaine

Jump to this post

@liangctoo , Hello Charmaine, and welcome to our group. I am happy that you found us. As you can see, we are a caring community. We can all sympathize with you as your mom's caregiver. I know one can feel helpless when answers are hard to find and your loved one feels so badly. There is a lot of info in our older posts if you want to take the time to read through some. We are happy to help answer your direct questions as well. Many people that contract a MAC infection often discover a secondary issue in the lung that made them susceptible to the infection. There is a disease called 'bronchiectasis', it is a structural lung disease that often goes undiagnosed. It can be found with a CT Scan. I would ask her doctor if he saw any evidence of bronchiectasis. Some doctors never even mention it (that happened to me) If your mom has that too, that would explain the lack of energy. The strong antibiotics she was on to treat the MAC can also drain your energy and may take awhile for the body to recover from. I am concerned that she caught pneumonia after coming off of her meds. Pneumonia is a serious infection. It drains one's energy and is uncomfortable; it can be downright painful. It can take months sometimes to get over it. Once she gets over the pneumonia, she may benefit from 'maintenance antibiotics. You can ask her physician about that. That is the regimen that I was put on. She needs to see an Infectious Disease doctor as well as a 'knowledgeable' pulmonologist. As for the depression, it is natural to feel depressed when you lack the energy to live your own life and feel so cruddy. That might even dissapate when she is feeling better (if she did not have depression issues prior to getting MAC). What is your mother's age? Are you able to get her to the doctor that @128128terry11t Terry recommended? We are here for you, big HUG to you both.

REPLY
nick52 | @nick52 | Oct 18, 2017
In reply to @liangctoo "Hi all, I'm excited to have found this group. I am posting on behalf of my..." + (show)
@liangctoo

Hi all,

I'm excited to have found this group. I am posting on behalf of my mother who was diagnosed with MAI about 15 months ago, and she's been on antibiotics for 13 of of those months. She recently got pneumonia, was hospitalized, was taken off of those - as they gave her other things - and in the last month or so, has been home healing up. She's struggling with the disease and I'm not sure how to help her. If anyone has advice or insight to our questions, I'm thankful in advance:

- While she was on the antibiotics, prior to the pneumonia, she was generally not feeling great, but her health seemed to be stable.
- Since she came out of the hospital, her pulmonary doctor said she can discontinue the antibiotics. Her recent CT scan shows no additional changes from last year, which is good news I think. But is discontinuing the medicine typical?
- My mother feels weak, has no energy, and says she's very uncomfortable, more than before. Should she expect to feel better? She seems to be healing very slowly, even at times it seems she's gotten worse than before; it's hard to tell.
- My mother also has depression. It's hard for the family to tell how much of this is physical and mental, though I know the two are intertwined. I'm going to suggest she go to a therapist in addition to her psychiatrist visits (30 mins once a month).
- Has anyone had experience with an MAI specialist in New York City? I tried calling Mt Sinai (who I understand is now associated with National Jewish Health) but their generalized appointment hotline was not very helpful.

Thank you,
Charmaine

Jump to this post

Dear Liangctoo,

Maybe you could check all the secondary effects of her anti-depression pills because my mother was more depress with anti-depressor pill. It really made a big change after we stop it so double check the secondary effects of all her medication.  That could

be the cause also. Good luck!

REPLY
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