(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!

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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:

  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

@colapyrus

Does anyone have the list of tests a person should be getting routinely if they are on the Big 3 antibiotics? Thanks. I have seen them several times on here but I didn’t save them, unfortunately. Jan

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Jan, Here you go. I saved this from one of Katherine’s posts:

Mayo Clinic Connect

Reply by @katemn on Thu, Jun 1

From my File Cabinet:
TESTING-baseline and periodic 1. Ethambutol – color vision and visual acuity: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
2. Azithromycin – hearing and balance: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
3. Rifampin – CBD (blood counts), liver and kidney function tests: GET BASELINE PRIOR TO STARTING .. THEN MONTHLY

OR TESTING:
BASELINE: HEARING AND VISION (Vision: Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

MONTHLY: BLOOD COUNTS, LIVER AND KIDNEY FUNCTION TESTS, SPUTUM CULTURES
QUARTERLY: HEARING and VISION
NOTE: Ethambutol – color vision and visual acuity – monthly ( Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

**** Lab tests:
CBC- Complete Blood Count (CBC)
ALT- Alanine Aminotransferase (ALT) LIVER
alk phosphatase- Alkaline Phosphatase – LIVER
serum creatinine-. Creatinine and Creatinine Clearance-SERUM CREATININE – KIDNEY

TESTING RECOMMENDED FOR VITAMIN LEVELS 1. Ask for your VD-3 level to be checked .. they can get too low. Speak to your Doctor first .. but I took: NATURE MADE brand 5,000 IU of Vitamin D-3 (NOT VD) *From our member @tdrell Terri, my Primary Dr at NJH

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@colapyrus

Does anyone have the list of tests a person should be getting routinely if they are on the Big 3 antibiotics? Thanks. I have seen them several times on here but I didn’t save them, unfortunately. Jan

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@lindam272 Thank you! I’ll save it this time. Jan

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@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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I am sorry to tell you this Cindy, but my doctor at Vanderbilt was adamant about NOT doing that. That is how resistance happens. I am not trying to sway you one way or another – just giving you information that was given to me by a highly respected ID doctor and transplant surgeon.

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@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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I left a message with a person that I was directed to at the CDC asking about testing water samples. Will let you know what I find out.

Liked by tdrell

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@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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Cindy, I am assuming you are replying directly from your e-mail in box. (I did the same too until I learned recently how to do it properly) You can ask Colleen for the technical help if you cannot get it figured out. You have to be ‘LOGGED IN’ to our forum and you check the box that says ‘STAY SIGNED IN’ if all else fails, you can click on the ‘SHOW IMAGES AND ENABLE’ message that is highlighted in blue at the top of your e-mail message and then go down to the button on the bottom left side of the Connect message from another member that says ‘REPLY AND POST’. by doing that, it connects your reply to the person you are talking to. Otherwise, your message floats out there unattached to the conversation you are trying to be a part of. If you still don’t get it straight and need more help, we can ask Colleen.

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@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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Cindy, I told you wrong. The button at the bottom left of a post is ‘VIEW AND REPLY’.

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@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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I was treated the same Cindy, on my first MAC infection back in 2005. It stayed dormant until 2013, then I was treated by alternating months of Cipro for 10 days one month and then the following month 10 days on Doxycycline. That cycle went on for another three yrs as a preventative measure to keep the MAC from colonizing. I did get ‘pseudomonas’ last Spring. It is another lovely bacteria that likes to attack weakened lungs. I did ask my Dr why he chose not to treat me with the BIG THREE antibiotics; he said he does not believe in it as a first line of defense. He saves that for chronic cases (repeat offenders) and the seriously infected. Doctors have different theories on how to treat MAC. It is only in recent times that this disease got much attention. Plus, the treatment is not a one size fits all kind of thing.

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@colapyrus

Does anyone have the list of tests a person should be getting routinely if they are on the Big 3 antibiotics? Thanks. I have seen them several times on here but I didn’t save them, unfortunately. Jan

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Hi Linda. Was wondering where you store and pull out these posts that you save? And then, how do you repost them? If it is too complicated of an answer, I will ask Colleen. I have saved some by bookmarking it to my profile page. Is that all I need to do? Thanks!

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@cila

Hi Catherine, when you inhale amikacin did you do coughing while your inhaling it? Also my throat is hurting and I’m losing a little bit of my voice. I’m not informing my pulmonary Dr. b/c I called NJH and I got an appt. there. Thanks for everything. I’m so glad I’m on this forum you guys help me a lot.

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Hi Heather! Yes, please do keep us posted about your results.

Liked by heathert

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Terri, I took a few hours one day and went through the emails that I had not deleted and stored them in folders in my email system. One group I created is “Testing – standard of care” which is where this email was. I copied it and pasted it in the reply post to Jan. I am happy to help whenever I can! Linda

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@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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Windwalker…..thanks!!! Tdrell

REPLY
@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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He said that the Mycobacterium Intracellulare type is generally from Soil

 

REPLY
@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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yes but water comes in contact with soil at some stage i guess.

Liked by tdrell

REPLY
@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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@windwalker Hi Terri, I also see that pink looking film in the corners of the tub/shower if I don’t clean for a few days. I saw it at my home in Brooklyn, NY where I lived for 23 years and I see it here, at my new home in Staten Island, NY, where I’m living since Feb 2017. I was diagnosed in Dec 2016 so I guess I got it while living in Brooklyn. I remember reading something about if you have the pink bacteria you don’t have the MAI/MAC bacteria in the water. Do I remember this correctly? Or have I misunderstood that?
P.S. thanks for becoming our volunteer mentor, it’s really appreciated. Also, I hope all goes well for Katherine and her husband and she’ll be able to “pop in” now and then to say hello.
Gina K

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Hi @cindymc and everyone,
I find it useful and helpful to reply to message on the Connect website, rather than reply by email. This allows you to see not only the single message that you’re responding to, but the whole conversation, including other replies that other members have made. It becomes more of a conversation around a table rather than one-on-one.
Here’s how to get to the discussion on the website from an email notification.

How to reply on Connect
1. Open the email notification
2. Click the VIEW & REPLY button at the bottom of the email.
This will take you directly to the message in the discussion thread. You can then scroll through the messages before and after.
3. Click REPLY and type your response.

Not logged in?
If you’re not logged in, then you will have to login first to reply. If you’re using a private computer, tablet or phone, you can choose to stay logged in. This means that you won’t have to login every time you go to the site. (If you use a shared or public computer, I do not recommend staying logged in.)

How to Login
1. Click LOGIN in the top right corner. (On mobile, click Login in the menu.)
2. Enter your email and password.
3. Check the box that says “Keep me signed in.”
4. Click Login.

Don’t hesitate to private message me if you have additional questions.

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