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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 28, 2017
In reply to @boomerexpert "@katemn: Well, m'dear, you did what few in life take the time, and have the compassion..." + (show)
@boomerexpert

@katemn: Well, m'dear, you did what few in life take the time, and have the compassion to do...pulling people together, giving them hope in the face of a fearful diagnosis, helping others even as you handle the same health issue yourself. I am proud to have become a part of this forum under your tutelage, and will always have my "Kate" voice helping me to determine the best response to others' concerns.
My wishes for you and your husband are, and will continue to be, improved health, and on-going happiness.

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Very well said.

REPLY
lindam272 | @lindam272 | Jul 28, 2017
In reply to @boomerexpert "@katemn: Well, m'dear, you did what few in life take the time, and have the compassion..." + (show)
@boomerexpert

@katemn: Well, m'dear, you did what few in life take the time, and have the compassion to do...pulling people together, giving them hope in the face of a fearful diagnosis, helping others even as you handle the same health issue yourself. I am proud to have become a part of this forum under your tutelage, and will always have my "Kate" voice helping me to determine the best response to others' concerns.
My wishes for you and your husband are, and will continue to be, improved health, and on-going happiness.

Jump to this post

Beautiful and so very true! Linda

REPLY
cila | @cila | Jul 28, 2017

Dear Katherine, I want to thank you for all you have done on this forum. Its kind a hurt to see you depart but your your husband and your health comes first. I will pray for both of you and hopefully someday you will be both well and say hello to us. In the meantime take care of yourself and God shower you with his Blessing. Big Hugs back to you! Cila

REPLY
Jennifer | @megan123 | Jul 28, 2017
In reply to @katemn "Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that..." + (show)
@katemn

Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that I would like to resign effective immediately as Volunteer Mentor of the " MAC & Bronchiectasis Mayo Connect". I feel @windwalker Terri is working very hard currently as well as all the wonderful members jumping in to help her keep the Forum alive and well.

I want to thank All Members for a wonderful experience .. it has been one of the most rewarding volunteer efforts of my life. I received MUCH more than I ever gave. I feel very comfortable departing as any Newcomer has been given instructions in https://connect.mayoclinic.org/discussion/file-cabinet-information-from-katherine/

to find any knowledge/wisdom that I may have been able to impart while I was the Volunteer Mentor. As new information becomes available .. Terri and the others will add it to the Forum. I have every confidence that the MAC & Bronchiectasis Mayo Connect will be alive and well just as long as it is needed!

Farewell to all .. thank you for the opportunity to serve you. I am sending Big Hugs and positive energy! Katherine

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I want to thank you Katherine for your kindness and helping me when I needed it most. You r a beautiful spirit, and will be missed. Sending u the white light with luv ❤️

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 29, 2017

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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31 replies
LauraL856 | @laural856 | Jul 29, 2017

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.

REPLY
2 replies
lindam272 | @lindam272 | Jul 29, 2017

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

REPLY
1 reply
lindam272 | @lindam272 | Jul 29, 2017

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

REPLY
2 replies
LauraL856 | @laural856 | Jul 29, 2017
In reply to @lindam272 "From Katherine's file cabinet (there is a link below these recommendations; however, you could also call..." + (show)
@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.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 29, 2017
In reply to @lindam272 "Colleen, I think this is a question for you: Here is something that just came to..." + (show)
@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

Jump to this post

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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