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(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

terryb1 | @128128terry11t | May 19, 2018
In reply to @joan912 "My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big..." + (show)
@joan912

My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big 3, but later told him not to take any, if he won’t take all 3. He had a bad reaction to Rifabutin, which caused chest pains. He asked if there was a substitute for that, but apparently not.

He had 2 CT Scans, one in March, the second in May. The second did show some improvement, but also diagnosed bronchiectasis, which the first Scan did not. He asked for another one this month. Now his doctor told him that he doesn’t need another CT Scan at all, and, if anything, he could have a Chest X-ray. A chest X-ray cannot diagnose bronchiectasis so, to me, her response is outrageous. His doctor seems to be very ineffective and doesn’t seem to care about his well-being. She never asks how he is, nor offer any solutions to his constant sputum. I’m afraid to ask for another pulmonologist at Kaiser, because I’m afraid they will back each other up, or at least not contradict each other.

Does anyone have experience with Kaiser? My husband wants to see numerous other pulmonologists in other cities and wants me to take time off from work (let alone spending a lot of money since it will all be out of pocket), to make appointments for him (he doesn’t work). I simply cannot do so, since I have no backup for my job. I’m willing to travel to one place, maybe Mayo Clinic in Rochester, MN.

If I can stay local, does anyone have a recommendation for a well-respected, knowledgeable MAC doctor in the Bay Area of California?

Jump to this post

@windwalker Thank you.

REPLY
gaelawree | @gaelawree | May 19, 2018
In reply to @gaelawree "Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I..." + (show)
@gaelawree

Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.

Jump to this post

Hi Teri, I have Kaiser Senior Advantage, & it is my Pulmonary specialist who discovered the MAC after my urging to find the cause of my COPD.

REPLY
hallann | @hallann | May 19, 2018
In reply to @hallann "Would appreciate any information on this mac lung disease was just told I have it scared..." + (show)
@hallann

Would appreciate any information on this mac lung disease was just told I have it scared of what I have read

Jump to this post

I'm not sure I haven't been to him yet my lung dr put me on the meds

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 19, 2018
In reply to @joan912 "My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big..." + (show)
@joan912

My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big 3, but later told him not to take any, if he won’t take all 3. He had a bad reaction to Rifabutin, which caused chest pains. He asked if there was a substitute for that, but apparently not.

He had 2 CT Scans, one in March, the second in May. The second did show some improvement, but also diagnosed bronchiectasis, which the first Scan did not. He asked for another one this month. Now his doctor told him that he doesn’t need another CT Scan at all, and, if anything, he could have a Chest X-ray. A chest X-ray cannot diagnose bronchiectasis so, to me, her response is outrageous. His doctor seems to be very ineffective and doesn’t seem to care about his well-being. She never asks how he is, nor offer any solutions to his constant sputum. I’m afraid to ask for another pulmonologist at Kaiser, because I’m afraid they will back each other up, or at least not contradict each other.

Does anyone have experience with Kaiser? My husband wants to see numerous other pulmonologists in other cities and wants me to take time off from work (let alone spending a lot of money since it will all be out of pocket), to make appointments for him (he doesn’t work). I simply cannot do so, since I have no backup for my job. I’m willing to travel to one place, maybe Mayo Clinic in Rochester, MN.

If I can stay local, does anyone have a recommendation for a well-respected, knowledgeable MAC doctor in the Bay Area of California?

Jump to this post

@megan123 Info was found on NIH.gov website.

REPLY
cila | @cila | May 19, 2018
In reply to @cowgirlmt "Has anyone been to National Jewish Health in Denver Colorado?? I did a phone consult with..." + (show)
@cowgirlmt

Has anyone been to National Jewish Health in Denver Colorado?? I did a phone consult with them this morning; pending an appointment. I am just trying to figure out if I will need to take a week off of work to fly up there or if it will just be an appointment 1 day.

Jump to this post

Hello cowgirlmt, been at NJH and first visit it about 10 days or 2 weeks. They check everything on your body. They are good over there. I have Bronchiectasis and MAC. MY Dr. here put me on 3 meds then after a year I had new nodules and he add another antibiotic. I took them for 18 months. When I saw Dr. at NJH she told to stop taking them. The meds made me sick on my stomach. I just came back from there last month. I do breading exercise, inhaling saline and physical exercise. Just wait and they will let you know about your appt. and you call them and ask question. I will have you in my prayer just hang in there. God Bless you and guide you. Cila

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 19, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

Jump to this post

@lauriefrancis I don't know if you ever got your answer about how to take Milk Thistle. It generally comes in pill form.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 19, 2018
In reply to @gaelawree "Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I..." + (show)
@gaelawree

Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.

Jump to this post

@gaelawree Do you have confidence that he knows how to properly treat you? Have you asked him how many cases of mac he has treated?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 19, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

Jump to this post

@joan912 Hello Joan. Do you mind if I ask how your husband's appt with Dr. Aksamit went at the Mayo?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 19, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

Jump to this post

@suzie2017 Suzie, I looked up the med your hubby is taking 'cefuroime axetil'. It is a broad spectrum antibiotic to kill bacterial infections. If you find that your husband is not improving on it, you can ask his dr to possibly switch him to moxyfloxcin. It is substantially stronger and it is one they use to treat mac. I had read that it is a good one to substitute the cefuriome with. I am glad he is on prednisone, that should help with the inflamation he probably has going on in his lungs. Oi hope that he gets to feeling better soon.

REPLY
joan912 | @joan912 | May 19, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

Jump to this post

Unfortunately Dr. Aksamit was sick that day so we didn't get to see him. We saw another physician who prescribed many tests, but since we were paying out-of-pocket, it was going to cost too much. We ended up just returning home.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 20, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

Jump to this post

@joan912 Oh no! That sounds disappointing. Does your husband have Medicare? I wish he could have gotten a consult at least by another physician. Had you taken his recent records with you?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 20, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

Jump to this post

@joan912 I am so sorry that it played out that way. Something doesn't sound right.

REPLY
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