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.

Katherine, Alumni Mentor | @katemn | Mar 28, 2017

Need lots of help
Posted by @shiell in MAC & Bronchiectasis, 1 hour ago
I introduced myself and problem a few weeks ago. I don't think I had reached the occurrence yet that I am writing about today. I had a six month visit with my pulmonologist and he ordered a sputum test because I complained of coughing more. Sadly the result was pseudomonas with only tobramycin and furzas recommended. Half way through the tobramycin I thought it was going to kill me. Doctor went immediately to 10 day program with furzas. I have finished that and they are leaving the picu line in case of needed repeat. Help

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Dear @shiell .. (and @windwalker, @tay4rake, @luvocean, and others dealing with Pseudomonas) I hope you don't mind but I am moving your post to an area where there are others dealing with Pseudomonas .. I am hoping you will receive more help there. I remember you are the caretaker for your husband so this must be a tough time for you.

I can only speak for myself. I was diagnosed with Pseudomonas 3/7/17. My Pulmonologist, Dr. Timothy Aksamit at Mayo Clinic, Rochester MN prescribed Cipro 500mg 2x per day for 28 days with the understanding that if that did not stabilize the Pseudomonas .. then we would do the Toby 28 days on .. 28 days off for a 3 time cycle. You might ask your Pulmonologist IF this might be an option for you? Sending you Hug and positive energy in this tough time! Katherine

REPLY
7 replies
Katherine, Alumni Mentor | @katemn | Mar 28, 2017
In reply to @maryjo2sell "Hi all. I was wondering if anyone has bought a portable nebulizer that would be suitable..." + (show)
@maryjo2sell

Hi all. I was wondering if anyone has bought a portable nebulizer that would be suitable for travel. Mine is very bulky and noisy. Thx fondly, Mary Jo

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@maryjo2sell, Mary Jo, in checking my File Cabinet I found the below from when I was using a nebulizer for inhaled Amikacin. The daily Pari really wasn't that bad .. but if you look at the link for the Pari I had for travel .. it really is small. I found both very usable .. and what saved my life was a hint I got which was to purchase a baby bottle sterilizer .. purchase extra nebulizer parts( where you breathe from) .. then I only had to clean the parts daily .. toss them into the sterilizer until I sterilized them weekly. It made the cleaning process much more bearable! Hope this is helpful! Hugs! Katherine

NEBULIZERS
PARI CUSTOMER SVC: 800-327-8632x1
DAILY USE:
1. PARI VIOS DELUXE SYSTEM (J-P310F35-LSD)
I found an EXCELLENT price for this unit at: http://justnebulizers.com/pari-vios.html?gclid=CN3otLjf5qsCFSkBQAodBW_SJw
BOUGHT FROM 1-800-998-7750 $55.95 .. good service and good price!

2. I PURCHASED .. SO WILL HAVE 7 NEBULIZERS-ONLY HAVE TO STERILIZE ONCE A WEEK!
PARI LC SPRINT Reusable Nebulizer Part No 023F35 $69.75
http://justnebulizers.com/pari-lc-reusable-nebulizer-set-buy-5-and-save.html
3. FOR TRAVEL I PURCHASED THE: PARI's TREK S 47F35-LCS $73.00
http://justnebulizers.com/pari-trek-s-compact-compressor-combination-pack.html?gclid=Cj0KEQjwk-jGBRCbxoPLld_bp-IBEiQAgJaftTVwkbErO_u3ZOcbxz0IfnYrud-94KGyrVRGpPRuRnsaAmpa8P8HAQ

REPLY
Katherine, Alumni Mentor | @katemn | Mar 28, 2017
In reply to @nanny2aak "I have been treated for MAC twice in the last 10 years . I also have..." + (show)
@nanny2aak

I have been treated for MAC twice in the last 10 years . I also have bronchietis as well as fungus which I am being treated fo now with noxafil as well as copd. Need some guidance as well as help in locating treatment and doctors to address all lung issues.

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@nanny2aak, Welcome .. so glad you found us! Do you have a first name .. so much more personal. If I was sitting in your shoes .. the FIRST thing I would do is find a GOOD Infectious Disease doctor since you have had MAC, Bronchiectasis, plus a fungus etc. How do you do that .. well reaching into my File Cabinet this is what I'd do:

1. Google: Infectious Disease Doctors in your area
2. Google each doctor .. see where they went to school .. my opinion .. the better school they went to .. the smarter they probably are
3. look for doctors photos (can be years old) that appear young enough to have newer knowledge but old enough to have good experience
4. call their office .. ask for a nurse to call you back .. if they ask why .. tell them you want to know "how many MAC patients has this doctor treated in the past 12 months?" If they don't even know what MAC is .. there is your answer!
5. when you find a doctor who has treated 12 or more MAC patients in the past 12 months .. GET an appointment .. THAT one will know how to treat you!
6. 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.

I would also recommend that you start reading past pages of our Forum .. there is SO much knowledge to be gained from our pages .. and remember "Knowledge is Power" .. the more you know about your diseases .. the more you can act as your OWN best Advocate! Why? Because NOBODY cares about your body as much as you do .. and unless YOU take care of your body .. it CANNOT take care of YOU for the rest of your lifetime! SO get started Girlfriend! Also, as you read please feel free to come back with ANY questions you may have .. we all have walked this journey ourselves and will be here for you! Sending you a hug! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Mar 28, 2017
In reply to @retyured "A family member was recently diagnosed. I've done some reading but not clear on the bronchiectasis...." + (show)
@retyured

A family member was recently diagnosed. I've done some reading but not clear on the bronchiectasis. Is that a result of chronic MAC or a contributing factor?

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@retyured, as @tdrell, Terri mentioned below in her post my Mayo doctor said it is a chicken/egg thing. Many MAC patients present with Bronchiectasis .. some do not... they do NOT know which comes first the MAC or the Bronchiectasis. Truthfully it does not matter .. it just plain needs to be treated and lived with. BUT if you have both it is imperative that you practice good "lung hygiene" meaning that you get the mucus UP and out because the mucus can be a breeding ground for more mycobacterium.

If you are interested in understanding Bronchiectasis you could sign up for the below newsletter https://bronchiectasisnewstoday.com/2017/01/05/antigen-presenting-cells-may-contribute-inflammation/

If you want to know more about MAC .. a good general info:

VERYGOOD INFO http://www.maclungdisease.org/more-mac-information (except: " be “cured” of their MAC lung disease. .. Dr. Aksamit considers it 'stabilized' .. NOT 'cured'.")
GOOD INFO http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf
GOOD INFO: http://maclungdisease.org/frequently-asked-questions https://www.ntminfo.org/faq/glossary
GOOD INFO: journal article led by Mayo Clinic's Dr. Timothy R. Aksamit. http://www.resmedjournal.com/article/S0954-6111(13)00379-X/fulltext

Hope the above help! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Mar 28, 2017
In reply to @cbest "Just got told I probably have MAC. I have been a respiratory therapist for 45 years..." + (show)
@cbest

Just got told I probably have MAC. I have been a respiratory therapist for 45 years and this is the first I have encountered this disease. So yes I am scared to death while I wait to see an Infectious disease dr. Would never have known I had anything until an episode of coughing up blood as I was working just before Thansksgiving. But it may have been a life saver since they did a CT. I have been treated from asthma and bronchitis almost cont. for a year or more now. My airways were so irritated and I just never seemed to get better or over the cough. No one looked for anything else. Any information and support will be appreciated.

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@lindam272, Linda, LOVE your response .. thank you SO much .. I just KNEW my group would jump in .. YEAH!!! Kudos to you! Big Hugs! Katherine

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Katherine, Alumni Mentor | @katemn | Mar 28, 2017
In reply to @cbest "Just got told I probably have MAC. I have been a respiratory therapist for 45 years..." + (show)
@cbest

Just got told I probably have MAC. I have been a respiratory therapist for 45 years and this is the first I have encountered this disease. So yes I am scared to death while I wait to see an Infectious disease dr. Would never have known I had anything until an episode of coughing up blood as I was working just before Thansksgiving. But it may have been a life saver since they did a CT. I have been treated from asthma and bronchitis almost cont. for a year or more now. My airways were so irritated and I just never seemed to get better or over the cough. No one looked for anything else. Any information and support will be appreciated.

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@cbest, I am so sorry this has happened to you .. but believe me .. you REALLY do not need to be "scared to death" .. why? Because each and every one of us on this Forum have walked in your shoes before .. AND walked out the other side. Truly! It will be ok. @lindam272, Linda gave you SUCH great advice .. I hardly have anything else to add other than to print out her post .. follow that advice .. then come back with any questions you might have. We have ALL been where you are .. and we will be here for you every step of the way. My only other advice is make SURE you find an Infectious Disease who has treated SEVERAL MAC patients in the past 12 months so they know what the heck they are doing. Call their office and ASK! Be you own best advocate! This is YOUR body .. take care of it! That is part of why you need to read the past pages .. to learn about your disease and take charge! Hope this helps a bit .. keep coming back .. we will be here for you! Hugs to you in this tough time! Katherine

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Katherine, Alumni Mentor | @katemn | Mar 28, 2017
In reply to @lbigboy "I am noticing older posts as in years, are there updates from patients who have had..." + (show)
@lbigboy

I am noticing older posts as in years, are there updates from patients who have had MAC and have been treated for over a year? I was diagnosed a year and a half ago and treated for approximately 8 months however, due to liver counts had to quit treatment. My MAC is now registering positive again and I have been referred to CDC for treatment. Is there anyone who has completed the treatment and not had to go back on the medication?

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@lbigboy, Hello .. do you have a first name .. more personal. Yes, I did complete treatment .. and I have NOT had to go back on the medication! So far so good! I did have to be on the antibiotics for thirty months because I had two mycobacterium .. one was a pretty nasty one called: MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES. Pretty hard to get rid of I guess. But so far so good as of my last appointment March 2017 for mycobacterium. However PSEUDOMONAS a different bacteria did show up and I am currently being treated for that. Hope that helps answer your question .. and hope others jump in with their answers. Katherine

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Katherine, Alumni Mentor | @katemn | Mar 28, 2017
In reply to @katemn "thank-you for being here Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago I was..." + (show)
@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don't know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

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@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don't mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN'T have to be that way. If you CHOOSE a "helping" career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a "helping" career. That is just my opinion. I don't feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member's path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

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@ijustdontbreathewell, .. if you having these kind of issues .. if I was in your shoes .. I would head for the BEST myself .. Mayo Clinic : per Colleen below .. there is a Mayo Clinic in Jacksonville, Florida. Here's the contact info. http://mayocl.in/1mtmR63can confer with the the MAC doctors in Rochester Mn ..

but AT LEAST consider what Boomer has said Posted by @boomerexpert, 1 day ago
If you're losing steam fast, recommend you go where you have support...sounds like that's So FL. Found this doc w/Cleveland Clinic: http://my.clevelandclinic.org/staff/19076-ignacio-echenique

Hope we have been of some help .. sounds like you are in a tough spot. Keep us posted. Katherine

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Katherine, Alumni Mentor | @katemn | Mar 28, 2017
In reply to @katemn "thank-you for being here Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago I was..." + (show)
@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don't know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

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@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don't mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN'T have to be that way. If you CHOOSE a "helping" career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a "helping" career. That is just my opinion. I don't feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member's path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

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@ijustdontbreathewell, I have been off the Forum with a family issue but just tonight have read your several posts .. unbelievable what you are going through .. I am SO sorry .. what a mess .. having just gone through a bunch of medical issues I am so aware of errors .. misdiagnoses .. lack of concern .. on and on and on. I really understand on a MINOR level compared with what you have gone through. BUT based on what I have read .. if I was you I wouldn't ;mess with it much longer .. I'd go get the BEST medical care at the BEST medical center .. remember .. you are only given one body in this lifetime .. if YOU don't take care of it .. it can't take care of you! I hope you make the right choice .. not the easy choice for that poor body of yours that has been through so darn much! Sending you a hug in this REALLY tough time. Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Mar 28, 2017
In reply to @barbjh "It has been some time since I have written on this forum but read most responses..." + (show)
@barbjh

It has been some time since I have written on this forum but read most responses every day. Tomorrow I go back to the Mayo for a follow up visit. Dr Aksamit has decided not to treat my MAC in the past but to just watch it. I will be doing tests tomorrow and then seeing someone in pulmonary who works under Dr Aksamit. I am a little nervous about this visit. Wish I was feeling better but that is not the case. But I have gained weight which was a concern after losing 10 pounds before. Another thing is I usually go alone so it can be overwhelming. At least I live close by, 1 1/2 hours away. I will let you know how it goes, just wanted to reach out to all of you wonderful people that can relate to the struggle. Barb

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@barbjh Barb, wondering how your Mayo appointment went? (I've been off the Forum for a family matter.) Could you take a minute and just update us? How was it going by yourself? Will it be less scary next time now that you know the routine? The fact that you gained some weight is good news! Keep us posted! Hugs! Katherine

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