(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

@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit “Reply” to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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just got this reply almost simultaneously to sending the question again – thank you so much!  And sorry for the repeat questions.  Pamela   

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@ginak

Thank you Terri, I’m going to check those out. I’ll also continue to read through these pages to see if I find anything.
Irene, I’m still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it’s a bacteria that’s “every where” and I’ve read some people were saying hot tubs.
I hate to say I’m glad I’m not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I’m happy to have found a place to talk about it.
Thank you all.
Gina

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Hi Pamela. Did you get my reply to these questions? I sent it earlier
today. 
 

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@ginak

Thank you Terri, I’m going to check those out. I’ll also continue to read through these pages to see if I find anything.
Irene, I’m still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it’s a bacteria that’s “every where” and I’ve read some people were saying hot tubs.
I hate to say I’m glad I’m not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I’m happy to have found a place to talk about it.
Thank you all.
Gina

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I got opinions from three drs when first diagnosed with MAC on whether to
do the three drug treatment. Two out of three said they would not do it because
there is only 50% chance it would work and it is hard on the liver. Then I read
MANY sites about treatment and outcomes online on reputable sites like various
medical institutions. It was a personal choice for me. I preferred not to
because I have a delicate system. At that time I was ultra sensitive to
practically EVERYTHING! i.e. scents from candles, perfume, deoderant, car fumes,
bonfires, foods like bread or any gluten, food coloring in M&Ms or Mt Dew,
and list goes on and on. I do not suffer from these any longer thank God. The
Mayo started me on alternating monthly antibiotics three yrs ago. 10 days a
month on Cipro, then 10 a month on doxycycline. That worked for awhile, but then
I guess the MAC bugs became resistant. A suseptabilty tests was run on my sputem
last June 2016 & then I was put on a 28 day regimen of Tobramycin every
other month alternating with Cipro for 10 days on the off months. So far this
has been wonderful. I NEVER cough now and sensitivities went away. It may have
been decided to treat me with the tobi because my drs may feel that I don’t have
time on my side. I may need a lung transplant in the near future. You cannot get
a transplant if you are colonized at the time because it can disseminate to
other parts of the body, especially the brain. Don’t mean to scare anybody, I am
not freaked out any more. It is what it is, and I try to be as diligent as
possible to care for my lungs.
 

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@ginak

Thank you Terri, I’m going to check those out. I’ll also continue to read through these pages to see if I find anything.
Irene, I’m still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it’s a bacteria that’s “every where” and I’ve read some people were saying hot tubs.
I hate to say I’m glad I’m not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I’m happy to have found a place to talk about it.
Thank you all.
Gina

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To Windwalker:  yes, I did get your reply to my first question.. but not to the second… the second answer may just be a little show to come through.  Thank you SO much!  Pamela   

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@ginak

Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a surgical lung biopsy and resection. I was searching for information when I found this site. I’ve read through quite a few pages and have found a lot of helpful information. I have been seeing a pulmonary Dr since January 2013 (when a CT scan showed multiple lung nodules). I have opted to not start antibiotics since I don’t seem to have any symptoms aside from a slight cough and some throat clearing. I was also diagnosed with acid reflux. Should I also be seeing an infectious disease Dr. and I was wondering if anyone could recommend a good Dr in the NYC area?

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Same here since 2012. So far, so good.

Liked by tdrell

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@ginak

Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a surgical lung biopsy and resection. I was searching for information when I found this site. I’ve read through quite a few pages and have found a lot of helpful information. I have been seeing a pulmonary Dr since January 2013 (when a CT scan showed multiple lung nodules). I have opted to not start antibiotics since I don’t seem to have any symptoms aside from a slight cough and some throat clearing. I was also diagnosed with acid reflux. Should I also be seeing an infectious disease Dr. and I was wondering if anyone could recommend a good Dr in the NYC area?

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@boomerexpert
My pulmonologist said the same thing. That’s why I opted to wait. I’ve now been checking for a Dr that also specializes in it and that takes my insurance. I want to have options, get a second opinion and be ready when and if I get symptoms.
Gina

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@ginak

Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a surgical lung biopsy and resection. I was searching for information when I found this site. I’ve read through quite a few pages and have found a lot of helpful information. I have been seeing a pulmonary Dr since January 2013 (when a CT scan showed multiple lung nodules). I have opted to not start antibiotics since I don’t seem to have any symptoms aside from a slight cough and some throat clearing. I was also diagnosed with acid reflux. Should I also be seeing an infectious disease Dr. and I was wondering if anyone could recommend a good Dr in the NYC area?

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That sounds like a good idea to me. Be sure to get sputem tests on a
regular basis so that it does not sneak up on you. Also, learn all that you can
about it. Knowledge is power!
 

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@colapyrus

I have been diagnosed recently with MAI and bronchiectasis but have very few symptoms. I have been reading the the previous posts (pages 1-10, 18-23) and have not read about many people having surgery to take out the damaged part of the lungs. My culture was negative for MAI for the first month and then it showed positive at the end. I’m assuming that means I don’t have a high concentration of the bacteria in my lungs yet. The sample came from a bronchoscopy so I think it is reliable. My doctor has mentioned that I might be a good candidate for surgery but I’m not sure what that means. I haven’t been to see an Infectious Disease dr yet or surgeon to talk about treatment but I thought I would ask the question here since you have been in the trenches so to speak. If they took out the right middle lobe (where the bronchiectasis is located) would I still be put on the meds treatment? Would they probably want me to be on the meds until I have the 12 months of negative sputum results before the surgery? Just wondering if anyone has any thoughts on this? Thanks. Jan

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@windwalker, Terri, my only concern in googling that you ONLY google medical sources such as Mayo Clinic, NHI, teaching hospitals etc. There is SO much garbage and misinformation out there on the internet .. we must be very cautious. Hugs! Katherine

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@ginak

Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a surgical lung biopsy and resection. I was searching for information when I found this site. I’ve read through quite a few pages and have found a lot of helpful information. I have been seeing a pulmonary Dr since January 2013 (when a CT scan showed multiple lung nodules). I have opted to not start antibiotics since I don’t seem to have any symptoms aside from a slight cough and some throat clearing. I was also diagnosed with acid reflux. Should I also be seeing an infectious disease Dr. and I was wondering if anyone could recommend a good Dr in the NYC area?

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Dear @ginak, (do you have a first name .. more personal!) First of all I want to thank all our wonderful members for all the helpful and welcoming posts they have made to you in the past two days as I was unable to get to my computer .. see what a great community of people you have found! Lovely people!

I TOTALLY concur with @irene5, Irene’s advice below .. get thee to an GOOD Infectious Disease doctor ASAP!! Please do read the past pages of our Forum to educate yourself so you can best advocate for yourself .. but until you have time to do so I will repeat my notes on finding a doctor:
INFECTIOUS DISEASE DOCTTOR
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 you find this helpful! .. and hope this enables you to find a GOOD ID doctor! Hugs to you! Katherine

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@ginak

Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a surgical lung biopsy and resection. I was searching for information when I found this site. I’ve read through quite a few pages and have found a lot of helpful information. I have been seeing a pulmonary Dr since January 2013 (when a CT scan showed multiple lung nodules). I have opted to not start antibiotics since I don’t seem to have any symptoms aside from a slight cough and some throat clearing. I was also diagnosed with acid reflux. Should I also be seeing an infectious disease Dr. and I was wondering if anyone could recommend a good Dr in the NYC area?

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@ginak, PHOOEY on that 50% .. educate yourself .. you’ll end up knowing more about our shared disease than THAT doctor!! Good luck!! Hugs! Katherine

Liked by tdrell, ginak

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@ginak

Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a surgical lung biopsy and resection. I was searching for information when I found this site. I’ve read through quite a few pages and have found a lot of helpful information. I have been seeing a pulmonary Dr since January 2013 (when a CT scan showed multiple lung nodules). I have opted to not start antibiotics since I don’t seem to have any symptoms aside from a slight cough and some throat clearing. I was also diagnosed with acid reflux. Should I also be seeing an infectious disease Dr. and I was wondering if anyone could recommend a good Dr in the NYC area?

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Hi Katherine, I have started reading all of the past pages and they have been very informative. I also appreciate all the advice I’ve been given. Thank you for starting the page and giving so many a place to share and receive information. I have now been searching for an ID Dr and will have a list of questions to ask. Thanks again to all.
Gina

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@ginak

Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a surgical lung biopsy and resection. I was searching for information when I found this site. I’ve read through quite a few pages and have found a lot of helpful information. I have been seeing a pulmonary Dr since January 2013 (when a CT scan showed multiple lung nodules). I have opted to not start antibiotics since I don’t seem to have any symptoms aside from a slight cough and some throat clearing. I was also diagnosed with acid reflux. Should I also be seeing an infectious disease Dr. and I was wondering if anyone could recommend a good Dr in the NYC area?

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@ehliny .. this is really helpful information .. thanks so much for jumping in! Hugs! Katherine (do you have a first name?)

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@ginak

Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a surgical lung biopsy and resection. I was searching for information when I found this site. I’ve read through quite a few pages and have found a lot of helpful information. I have been seeing a pulmonary Dr since January 2013 (when a CT scan showed multiple lung nodules). I have opted to not start antibiotics since I don’t seem to have any symptoms aside from a slight cough and some throat clearing. I was also diagnosed with acid reflux. Should I also be seeing an infectious disease Dr. and I was wondering if anyone could recommend a good Dr in the NYC area?

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@ginak, Gina, below are some notes I have made on GERDS:
GERDS
Helpful: *fluid restriction 6 ounces an hour including yogurt ice cream….no eating 3 hours before sleep…no laying on right side when sleeping….anatomically it encourages fluid from stomach to go into lungs.
* Prop up the bed. When you stick blocks under the head of your bed and raise it 6 to 8 inches, gravity will prevent the acids in your stomach from flowing into the esophagus during the night. Tight waistbands can aggravate your GERD symptoms. Wear looser clothing, especially at night. YOU COULD DO THIS .. which a good friend of ours did with his GERDS .. RAISED HIS BED VIA .. read the reviews $18. Home-it Adjustable Bed Risers or Furniture Riser bed lifts in Heights of 8, 5 or 3 Inches Heavy Duty Set of 4 bed riser
https://smile.amazon.com/Home-Adjustable-Risers-Furniture-Heights/dp/B00MH74S16/ref=sr_1_cc_1?s=aps&ie=UTF8&qid=1484857546&sr=1-1-catcorr&keywords=bed+raiser
Hope the above helps a bit! Hugs! Katherine

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@ginak

Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a surgical lung biopsy and resection. I was searching for information when I found this site. I’ve read through quite a few pages and have found a lot of helpful information. I have been seeing a pulmonary Dr since January 2013 (when a CT scan showed multiple lung nodules). I have opted to not start antibiotics since I don’t seem to have any symptoms aside from a slight cough and some throat clearing. I was also diagnosed with acid reflux. Should I also be seeing an infectious disease Dr. and I was wondering if anyone could recommend a good Dr in the NYC area?

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Heather and @ehliny, I can only speak for myself .. but if I take my Aciphex RELIGIOUSLY early in the day .. I just do not have any GERDS issues .. if I goof up for whatever reason and take it later in the day .. oh pain! For whatever reason I have not seen a correlation between lung flare ups and my GERDS .. hmmm. Interesting how our bodies are so different! Hugs! Katherine

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@ginak

Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a surgical lung biopsy and resection. I was searching for information when I found this site. I’ve read through quite a few pages and have found a lot of helpful information. I have been seeing a pulmonary Dr since January 2013 (when a CT scan showed multiple lung nodules). I have opted to not start antibiotics since I don’t seem to have any symptoms aside from a slight cough and some throat clearing. I was also diagnosed with acid reflux. Should I also be seeing an infectious disease Dr. and I was wondering if anyone could recommend a good Dr in the NYC area?

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Boomer .. yes it is best to wait IF you are ‘stable’ with NO mycobacterium colonizing. BUT your statement ‘Once on the antibiotics there’s no turning back ‘ is ONLY accurate IF you STOP treatment BEFORE you SHOULD .. ie BEFORE you have had 12 months of negative sputum cultures .. MEANING the antibiotic treatment has WORKED! Meaning you are now ‘stable” from the antibiotic treatment.

I myself WAS colonizing .. I DID the antibiotic treatment with VERY bearable side effects .. THAT is why I wrote that initial 2007 post to MAYO CLINIC .. BECAUSE I did not want people to be afraid of the antibiotic treatment. BECAUSE I had read things on the internet that had scared me off treatment until I got a SECOND serious abscessus mycobacterium! I REALLY wish I had gone on the antibiotic treatment initially when I only had ONE mycobacterium .. didn’t wait until I had TWO mycobacterium that had to be treated.

So, yes IF the mycobacterium is NOT growing/colonizing .. there is NO reason to begin the antibiotic treatment .. BUT it is imperative for people to do their ‘due diligence’ .. educate themselves .. AND make sure they continue with their follow up care to make sure they are STILL stable NOT colonizing!! Katherine

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