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!

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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.

Suzie2017 | @suzie2017 | Apr 22, 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?

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I will be very interested to hear what alternatives they recommend. Could you please keep me informed. Thank you.

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joan912 | @joan912 | Apr 22, 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?

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Yes, I will do that.

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desertnurse | @desertnurse | Apr 22, 2018
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

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Hello Kate, Thank you so much for this post! I was recently diagnosed with MAC. I am a retired CCRN. I have no symptoms other than fatique which I attributed to lack of sleep and supplemented my tiredness with afternoon naps. I started Azithromycin 500 mg on 4/2/18, added Ributin 300 mg on 4/9/18. I was having nausea almost immediately after the Ributin but I was managing it. That is until I added the Moxifloxocin 400 mg on 4/15/18. It felt like someone poured poison into my body. My GI system was on fire, I had nausea, vomiting, diarrhea, dizziness, headache, agitation and shaking. I lost 9 pounds in 4 days. After 4 days I ended up in the ER where I received IV hydration, IV Zofran and a prescription for Carafate and Prototonix. That was 2 days ago. I am still nauseated. I feel like I am still in the stage of denial and at this point I feel that the cure is worse than the disease. I stopped all three meds. My doctor simply said that if I can't take all three than she'll have to refer me for IV infusion therapy through a PICC line. I am upset and very unhappy. The more I read about this disease the more I am doubtful about it. It all started on December 1st. 2017 with pneumonia. I live in Souther California. Any input from you would be greatly appreciated.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 23, 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. I am glad that your husband is seeing a doctor at the Mayo. Since ypur husnand doesn't tolerate the Big 3 very well, ask Dr. Aksamit if he could speak with my doctor at the Mayo in Jacksonville and perhaps discuss an alternaive way to treat your husband. I am treated at the Mayo in Florida by Dr. Leventhal. He believes the Big 3 are ovet prescribed. He put me on an alternating drug tjetapy where I tale one antibiotic a month for ten days. I test negative now, but continue the treatment as a prophylaxis to keep me from getting it again. I also have taken all of the other precautions to keep from getting re-infected. I hope you will keep us posted as to what Dr. Aksamit says. I wish your hubby the best outcome.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 23, 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, Joan, it is rare that men get ac infection; may I ask what he did for a living?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 23, 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?

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@meagan123, I would have to research back to where exactly I learned this information. I may have read ot in some of Dr. Falkingham's medical journals (Google him and you will learn a lot about mac) He is a mac researcher at Va. Tech. I may have read it or saw videos from the NTM.org group. Or possibly from a speaker that was at the conference in D.C. The information is out there, you just have to take the time to dig for it. If I run across the info in print again; I will pass it along. I will see if I can pull it up from some older posts.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 23, 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?

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@megan123, I looked back on older posts regarding this issue. You and Katherine have even had this conversation over a year ago. Katherine stated she would never get into a public pool again once she found out what bacterias lurk there. There are listed threads on our mac communty. There is one for swimmimg pools. Do you know how to use this site and find topics that we have discussed? If you don't; let me know and I will try to help. How are you doing these days? Are you clear of mac as of now?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 23, 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, I Googled mycobacterium avium swimming pools and lots of info popped up. I am on my phone doing this so I don't have a lot of options for copying and pasting it to you. I am still learning ways to import info for our support group. If you want, Google it for now. I was bummed to learn that there is no completely safe place for us to enjoy the water. I have read that mac is even in the ocean!! I moved to the beach to swim in the ocean. I don't go in the ocean much here, not because of mac, but because of the large sharks they have been catching off our coast. (16 ft great whites and 12 ft tiger sharks) I am sorry but that does give me pause.

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Sophie | @sophie1019 | Apr 23, 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

Can you give me the name of the med you take for ten days. Would truly appreciate it...

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joan912 | @joan912 | Apr 23, 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?

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Thank you, I will mention your doctor's therapy to Dr. Aksamit.

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