(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

Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking back the power over your health care” will forever remain with me and continue to echo throughout Connect. Now Katherine (@katemn) is practising what she preaches — knowledge is also knowing when it is time to take care of oneself.
Thank you from a community you helped make strong.
Always grateful
Colleen

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For those of you with MAC/MAI – my mother was recently diagnosed. She lives in southeast Pennsylvania. She would like a second opinion and was wondering if anyone knows anything about the hospitals in the Philadelphia area. Penn Medicine has a lung center with a Mycobacterium clinic. Also open to any other hospitals/clinics on the east coast. Any advice appreciated.

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From Katherine’s file cabinet (there is a link below these recommendations; however, you could also call one of these doctors and ask if they would have a recommendation in your area which is why I left them in this post):

DOCTORS-NYC From membe @ehliny: outstanding pulmonary doctor in NYC: Dr. Louis de Palo at Mt. Sinai Respiratory Clinic: (212) 241-5656. I also have a first-rate GERD doctor in Dr. Jonathan Aviv, 210 East 86th St: 212-722-5570. Dr. de Palo is not quick to prescribe antibiotics if you don’t show full range of MAC symptoms. Dr Aviv (and I) believe there is a strong association between gastric reflux and lung disorders. I have a lot of confidence in both these physicians. Dr. Timothy Aksamit at MAYO Rochester had also recommended a NYC doctor for MAC, Dr. Doreen Adrizzo Harris, at NYU Pulmonary Medicine.

DOCTOR-FINDING A GOOD INFECTIOUS DISEASE DOCTOR https://www.ntminfo.org/patients/physician-referral-list move down the page to YOUR STATE

INFECTIOUS DISEASE DOCTOR
1.GOOD Infectious Disease doctor locally. Just google it
2. call the various offices .. ask to speak to a nurse .. ask ‘How many MAC patients has your doctor seen in the past 12 months?’ If a NURSE in the office does not even KNOW what MAC is .. that is a pretty good tip off that office does NOT treat MAC patients!
3. Request an appointment with the BEST ID doctor locally you can find
4. I would collect AN/Y/ALL medical records I could get my hand on from ANY/ALL doctors you have seen. It may take them emailing you Authorizations for Release of Information .. BUT DO get started.
5. Having read ALL the back pages of this Forum .. done your ‘due diligence’ .. educating yourself .. you will NOW have a LONG page of questions and will KNOW exactly WHAT the ID doctor SHOULD be doing for you .. or NOT doing.

Hope this helps you, Laura!

Linda

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Colleen, I think this is a question for you: Here is something that just came to me as I was trying to retrieve a post to help Laura. I have saved the emails I felt were important and put them in my own files in my Outlook; however, I’ve noticed a couple of times that if the emails were long, I don’t always have the full content and when I try to go back and view the post it says the page is not available. I know it’s there, but where it is would be a mystery since we are almost at 300 pages. I’m wondering if we put a date on our posts – the significant ones with information that would help others, not necessarily the chatty ones, if that would help us locate them within the pages of this forum? Can you help, Colleen? Linda

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@lindam272

From Katherine’s file cabinet (there is a link below these recommendations; however, you could also call one of these doctors and ask if they would have a recommendation in your area which is why I left them in this post):

DOCTORS-NYC From membe @ehliny: outstanding pulmonary doctor in NYC: Dr. Louis de Palo at Mt. Sinai Respiratory Clinic: (212) 241-5656. I also have a first-rate GERD doctor in Dr. Jonathan Aviv, 210 East 86th St: 212-722-5570. Dr. de Palo is not quick to prescribe antibiotics if you don’t show full range of MAC symptoms. Dr Aviv (and I) believe there is a strong association between gastric reflux and lung disorders. I have a lot of confidence in both these physicians. Dr. Timothy Aksamit at MAYO Rochester had also recommended a NYC doctor for MAC, Dr. Doreen Adrizzo Harris, at NYU Pulmonary Medicine.

DOCTOR-FINDING A GOOD INFECTIOUS DISEASE DOCTOR https://www.ntminfo.org/patients/physician-referral-list move down the page to YOUR STATE

INFECTIOUS DISEASE DOCTOR
1.GOOD Infectious Disease doctor locally. Just google it
2. call the various offices .. ask to speak to a nurse .. ask ‘How many MAC patients has your doctor seen in the past 12 months?’ If a NURSE in the office does not even KNOW what MAC is .. that is a pretty good tip off that office does NOT treat MAC patients!
3. Request an appointment with the BEST ID doctor locally you can find
4. I would collect AN/Y/ALL medical records I could get my hand on from ANY/ALL doctors you have seen. It may take them emailing you Authorizations for Release of Information .. BUT DO get started.
5. Having read ALL the back pages of this Forum .. done your ‘due diligence’ .. educating yourself .. you will NOW have a LONG page of questions and will KNOW exactly WHAT the ID doctor SHOULD be doing for you .. or NOT doing.

Hope this helps you, Laura!

Linda

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Thanks so much, Linda. The NTMINFO web site has a lot of great info.

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@lindam272

Colleen, I think this is a question for you: Here is something that just came to me as I was trying to retrieve a post to help Laura. I have saved the emails I felt were important and put them in my own files in my Outlook; however, I’ve noticed a couple of times that if the emails were long, I don’t always have the full content and when I try to go back and view the post it says the page is not available. I know it’s there, but where it is would be a mystery since we are almost at 300 pages. I’m wondering if we put a date on our posts – the significant ones with information that would help others, not necessarily the chatty ones, if that would help us locate them within the pages of this forum? Can you help, Colleen? Linda

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Hi Linda, i can help with this. Im currently travelling (on vacation) and limited to my phone. I’ll get this sorted when i return.

In the meantime, you might try this work around. If you know who posted the information, click their username and scroll through their posts. That may still be a lot of posts depending on the member. Hopefully it helps in the meantime.

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@lindam272

Colleen, I think this is a question for you: Here is something that just came to me as I was trying to retrieve a post to help Laura. I have saved the emails I felt were important and put them in my own files in my Outlook; however, I’ve noticed a couple of times that if the emails were long, I don’t always have the full content and when I try to go back and view the post it says the page is not available. I know it’s there, but where it is would be a mystery since we are almost at 300 pages. I’m wondering if we put a date on our posts – the significant ones with information that would help others, not necessarily the chatty ones, if that would help us locate them within the pages of this forum? Can you help, Colleen? Linda

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Thanks, Colleen! Enjoy your well deserved vacation. I will do that. Katherine’s posts so will be a ton but I got what I needed today so we’re good. Linda

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Katherine, thank you so much for all your support to this group. You have been a valuable source for information and were very committed to the cause. You have my prayers and thoughts for a healthy recovery. We will miss you but understand.

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@laural856

For those of you with MAC/MAI – my mother was recently diagnosed. She lives in southeast Pennsylvania. She would like a second opinion and was wondering if anyone knows anything about the hospitals in the Philadelphia area. Penn Medicine has a lung center with a Mycobacterium clinic. Also open to any other hospitals/clinics on the east coast. Any advice appreciated.

Jump to this post

This Philly girl has great faith in Penn…look no further…

Liked by Jamie Olson

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@colleenyoung

Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking back the power over your health care” will forever remain with me and continue to echo throughout Connect. Now Katherine (@katemn) is practising what she preaches — knowledge is also knowing when it is time to take care of oneself.
Thank you from a community you helped make strong.
Always grateful
Colleen

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I found this Forum when I became ill this year with a lung infection. I had been diagnosed with MAC in 2001 and was treated with the Big 3. I was susceptible because of radiation for Stage 4 Breast Cancer in 1988 (which I have survived).
Now I have a daily low grade temp and all the symptoms of a Big MAC infection. My doctor has been reluctant to treat me again with the Big 3 because I am now 89 yrs old and the side effects would probably kill me.
I was first diagnosed with bronchiectasis and then COPD. But the lengthy lab tests showed that I do indeed have MAC plus M. lentiflavin, which is new. Consultation with an Infectious Diseases doctor has resulted in a decision to treat me with Cipro to try to eliminate the pesky symptoms and give me a better quality of life.
windwalker writes that using the Big 3 is less common, which is worth looking into.
I have appreciated the comments in this Forum, which encouraged me. As patients, we need to keep asking questions and looking for answers. I live near Palo Alto, CA, and my doctors are at Kaiser Santa Clara. robynmar

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I’m Jan…… two years ago I was diagnosed in Rochester with bronchiectasis. The sputum tests at that time showed just a trifle of MAC and the pulmonologists there decided to not treat unless it became worse. I have done very well with the antibiotics for flares which happen about every 4 weeks — since then — but upon reading here am seeing that most everyone is being treated for MAC. I’m wondering if I should be re-tested or any such thing. I think I’m okay, but was told it was very difficult to treat if we needed to. The sputum tests I have done locally (I’m in Kansas) have been coming back negative but they are not being cultured for MAC. If the intial sputum test is negative — does that necessarily mean I do not have MAC at the present time or —– do I need further tests. I haven’t been back to Mayo’s in two years but have been working with Dr. Moua there if I have a flare and he orders antibiotics according to what the sputum sample shows (MRSA, MSSA, pseudamonas, etc). Can anyone shed any light on this for me?

REPLY
@colleenyoung

Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking back the power over your health care” will forever remain with me and continue to echo throughout Connect. Now Katherine (@katemn) is practising what she preaches — knowledge is also knowing when it is time to take care of oneself.
Thank you from a community you helped make strong.
Always grateful
Colleen

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Hi Robyn! Thank you for sharing your story with the forum. As you have stated that your age being a factor, I would imagine that they would want to have you on cipro on a regular basis as a maintenance therapy. I agree, the BIG THREE might just prove to be too much at age 89. Does anybody else have some input for Robyn?

REPLY
@colleenyoung

Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking back the power over your health care” will forever remain with me and continue to echo throughout Connect. Now Katherine (@katemn) is practising what she preaches — knowledge is also knowing when it is time to take care of oneself.
Thank you from a community you helped make strong.
Always grateful
Colleen

Jump to this post

I was put on cipro for pseudomonas bacteria —– does it work on MAC too????

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@colleenyoung

Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking back the power over your health care” will forever remain with me and continue to echo throughout Connect. Now Katherine (@katemn) is practising what she preaches — knowledge is also knowing when it is time to take care of oneself.
Thank you from a community you helped make strong.
Always grateful
Colleen

Jump to this post

Jan, I assume it does because I was put on that (Cipro) and Doxycycline to treat my MAC in 2013. I took each one for 10 days on alternating months for three years. I am an unusual case, so they did not want to treat me with the BIG THREE.

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Jan, just curious, how do you know they are not being cultured for MAC? You can request a hard copy of your lab TESTS to see what tests they did. You should probably call Dr. Moua and ask if the MAC test was ever ordered. I have a feeling you were tested for MAC because it usually goes hand in hand with bronchiecstasis (but not always). I just asked the nurse to my doctor about my lab tests the other day and asked for hard copies. She said the labs use the usual petri dish mediums for lung patients and just wait and see what grows. I asked a microbiologist at Va. Tech about it, he said there are specific mediums used in the petri dishes for different bacteriums. Guess what, that still tells us nothing. That is why it is important to go to good I.D. doctors that specialize in our disease uses reputable labs. Please keep us posted. – Terri M.

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