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.

Katherine, Alumni Mentor | @katemn | Jun 10, 2017
In reply to @unicorn "Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably..." + (show)
@unicorn

Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably had it since the 70's. I've taken the meds for a few years, but disease always comes back, and the meds are barely tolerable now. Went to new doc at Mass. General who put me on a nebulizer breathing salt water vapor and albuterol, instead of taking meds. I think it just causes all the mucus to come up so one is less prone to infection. i actually haven't started it yet. i'vebeen off
pills for 5 months and am coughing up blood again. Seriously, so scary I just want a death pill, who wants to live like this?? I am 70 so I am sure that is a factor. xo hope all doing better!

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@unicorn Hello! Do you have a first name .. more personal. Hmm, you have been through a tough time .. I'm really sorry. I REALLY question if you have been treated properly for your MAC. I was diagnosed with MAC/MAI .. was on the meds for THIRTY months .. BUT now I have been stable since 2014. I wonder IF you had the wrong "cocktail" .. wrong length of time for MAC .. just what/why. I am not a doctor but my guess the blood is the Bronchiectasis .. I cough up some blood also .. no big deal. If I was sitting in your shoes I would find a REALLY good infectious disease doctor and get to the BOTTOM of this .. Girlfriend .. I am 73 .. you get going .. a GOOD resource for finding a good ID doctor from my File Cabinet:

1. MAYO CONTACT INFO If you would like to seek help from Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63
** Minnesota campus for an appointment, here's the number: 507-538-3270
2. JEWISH NATIONAL HEALTH https://www.nationaljewish.org/treatment-programs/directory/ntm
3. 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.
4. D0CTOR-ATLANTA GA From Membeer @janovr .. Dr. Colin Swenson Emory/St. Joseph’s Hospital Atlanta, GA
5. D0CTOR-CHICAGO Dr James Cook at Loyola, Chicago
6. D0CTOR-DENVER Dr Gwen Hewit in Denver as experts.
7. DOCTORS-AZ Member @lindam272, Linda He’s supposed to be one of the best. My ID doctor in Arizona, Dr. Justin Seroy, interned under Dr. Cook.
8. DOCTOR-FINDING A GOOD INFECTIOUS DISEASE DOCTOR https://www.ntminfo.org/patients/physician-referral-list move down the page to YOUR STATE

Also, read through the back pages of this Forum to educate yourself .. REALLY good information! Come back with any questions! Big Hugs! Katherine

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 10, 2017
In reply to @katemn "Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research? I..." + (show)
@katemn

Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research?

I was diagnosed with MAI/MAC in 2011 at Mayo Clinic, Rochester MN by Dr. Timothy Aksamit .. a worldwide respected expert on MAC/MAI. I found his philosophy on initial diagnosing of MAC/MAI to be EVALUATING: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. and my responses to his VARIOUS medical questions. He then puts it all together like a big puzzle and then based on his MAI/MAC experience decides if/when to treat with what antibiotic regimen.

I am going to be very frank with you as the Volunteer Mentor of this Mayo Clinic Connect .. I find your statement " bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples." .. to be possibly misleading and frightening to our newer members just newly diagnosed.

I am not a doctor but even I know a bronchoscopy to be MUCH more invasive than the method used by Dr. Timothy Aksamit. IF/WHEN the MAC/MAI CANNOT be diagnosed by 3 consecutive sputum tests (the currently accepted "gold standard) there definitely are times when further means are necessary for diagnosis such as a bronchoscopy etc. But for you to say that " bronchoscopy to obtain samples and a possible biopsy even better" makes me very uncomfortable. I could not allow your statement to stand on our Forum that Newcomers might read and be frightened by.

Mayo Clinic abides by the Hippocratic Oath .. “first, do no harm” .. LESS IS MORE! Katherine. Volunteer Mentor

Jump to this post

Thank you for saying that Katherine. I was told by my Mayo Dr that a
bronchoscopy I had by a local Dr several years back was an unnecessary
procedure, that all I needed to have done was a sputem culture.
 

REPLY
Katherine, Alumni Mentor | @katemn | Jun 10, 2017
In reply to @internalmeddoc "I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI...." + (show)
@internalmeddoc

I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI. Would just like to mention that a sputum sample to detect MAC (AFB stain) is just an initial probe and not nearly enough to detect this disease in most cases, even when such sputum samples are repeated 3 or more times which is a good idea. Culture (AFB culture) is better and bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples. MAC/MAI is not always an easy disease to detect. Hope this helps.

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@afcardieri, Fillis, you need to be aware that at least Dr. Aksamit of Mayo Clinic feels that mycobacterium can be "treated" and "stabilized" but that when it becomes stabilized it is still in our lungs .. becomes kind of dormant so to speak .. becomes just a FEW of those darn little critters in my mind .. just waiting for me to become lazy about my "lung clearance" .. exercise .. healthy living .. healthy eating .. serenity. THEN when/if my immune system gets bad .. those nasty critters can then multiply into "colonies" and will have to be treated yet again .. OR since our lungs have become weakened by the MAC/MAI .. unfortunately they could be invaded by various bacterias like mine were this year. It is just a fact of life for us. What is .. IS! We MUST remain vigilant once we have ended our MAC/MAI treatment with regular check ups.

From my File Cabinet:
TESTING-AFTER ANTIBIOTIC TREATMENT ENDS I can ONLY speak for myself about what testing is correct after going off antibiotic treatment. Personally I had quarterly check ups with my doctor including sputum cultures initially .. then as he put the 'puzzle' together based on the results of the sputum culture/Xray/Pulmonary Testing ..deciding when to go to semi annual .. then to annual .. sometimes then back to semi annual. It is ALL up to your GOOD Infectious Disease doctor who is KNOWLEDGEABLE about MAC. But it is my understanding there SHOULD be follow up check ups to CONFIRM that the MAC in your lungs is STILL negative/NOT colonizing. Without CONTINUING checkups (I expect for my life time) we have NO idea if the MAC is colonizing .. OR IF we are still negative! Those nasty critters DON'T disappear .. just lie there in waiting .. that is why it is so important to take good care of ourselves .. eat healthy .. exercise .. stay positive .. be serene! Hope this is helpful. Katherine

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 10, 2017
In reply to @internalmeddoc "I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI...." + (show)
@internalmeddoc

I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI. Would just like to mention that a sputum sample to detect MAC (AFB stain) is just an initial probe and not nearly enough to detect this disease in most cases, even when such sputum samples are repeated 3 or more times which is a good idea. Culture (AFB culture) is better and bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples. MAC/MAI is not always an easy disease to detect. Hope this helps.

Jump to this post

Hello, I learned at a MAC conference last month that the experts think we
may be getting re-infected by the biofilm of MAC in our hot water tank and
pipes. They suggested turning the hot water tank temp up to at least 120 degrees
or higher. Run your faucet water a few minutes before use to flush out any MAC
that have collected in the faucets. If you have water filters, they need to be
changed at least every two months. Soak showerheads in vinegar for several hours
every six months by tying a baggie with vinegar in it over the showerhead with a
twist tie. Other habits to break that may have been a source are hot tubs,
swimming in indoor pools, pond water, and lakes. These are only a few of
the possibilities.
 

REPLY
tdrell | @tdrell | Jun 10, 2017
In reply to @unicorn "Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably..." + (show)
@unicorn

Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably had it since the 70's. I've taken the meds for a few years, but disease always comes back, and the meds are barely tolerable now. Went to new doc at Mass. General who put me on a nebulizer breathing salt water vapor and albuterol, instead of taking meds. I think it just causes all the mucus to come up so one is less prone to infection. i actually haven't started it yet. i'vebeen off
pills for 5 months and am coughing up blood again. Seriously, so scary I just want a death pill, who wants to live like this?? I am 70 so I am sure that is a factor. xo hope all doing better!

Jump to this post

Unicorn....is it time for second opinion at Mayo or National Jewish health? There are those of us who have gone to either for second opinions. What do the CAT scans of chest show?tdrell

REPLY
Katherine, Alumni Mentor | @katemn | Jun 10, 2017
In reply to @internalmeddoc "I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI...." + (show)
@internalmeddoc

I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI. Would just like to mention that a sputum sample to detect MAC (AFB stain) is just an initial probe and not nearly enough to detect this disease in most cases, even when such sputum samples are repeated 3 or more times which is a good idea. Culture (AFB culture) is better and bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples. MAC/MAI is not always an easy disease to detect. Hope this helps.

Jump to this post

@windwalker Terri, again.. great advice .. thank you! Going to add your post to my File Cabinet! Hugs! Katherine

REPLY
boomerexpert | @boomerexpert | Jun 10, 2017
In reply to @unicorn "Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably..." + (show)
@unicorn

Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably had it since the 70's. I've taken the meds for a few years, but disease always comes back, and the meds are barely tolerable now. Went to new doc at Mass. General who put me on a nebulizer breathing salt water vapor and albuterol, instead of taking meds. I think it just causes all the mucus to come up so one is less prone to infection. i actually haven't started it yet. i'vebeen off
pills for 5 months and am coughing up blood again. Seriously, so scary I just want a death pill, who wants to live like this?? I am 70 so I am sure that is a factor. xo hope all doing better!

Jump to this post

@unicorn Some thoughts from a kindred spirit: My life has been greatly diminished by Rheumatoid Arthritis, then moreso by MAC & bronchiectasis...some days I feel that I simply cannot keep my head above water, and when I get to take a breath, am hit with another debilitating illness...
Yet folks are quite taken aback by my ability to keep a truly happy demeanor - I get "oh I'm feel so sorry for you, how do you do it???!!"
I decided a while ago that I will not feel sorry for myself; that impedes effectively handling what I'm given, as in, do I want to become downtrodden and feel a victim, or stand up to my afflictions and be happy regardless of them?
I also realized that as unpleasant as my situation is, I feel so very blessed that it isn't Alzheimers from which my grandmother died, or ALS that I see ravaging my friend's body and mind, or cerebral palsy, or the many other fully debilitating conditions I could've gotten instead.
My life is changed, and at times unfun (I love that word...!) but if the thousands of people I see rising above those conditions can do it, I can...they are my inspiration.
Get that mucus up to lower your risk of infection. Search for docs well versed in your more advanced case...there are treatments out there when antibiotics are no longer helping, but only the most skilled, knowledgeable docs will know them...
You have choices. Don't ever give up.

REPLY
irene5 Irene Estes | @irene5 | Jun 10, 2017
In reply to @unicorn "Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably..." + (show)
@unicorn

Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably had it since the 70's. I've taken the meds for a few years, but disease always comes back, and the meds are barely tolerable now. Went to new doc at Mass. General who put me on a nebulizer breathing salt water vapor and albuterol, instead of taking meds. I think it just causes all the mucus to come up so one is less prone to infection. i actually haven't started it yet. i'vebeen off
pills for 5 months and am coughing up blood again. Seriously, so scary I just want a death pill, who wants to live like this?? I am 70 so I am sure that is a factor. xo hope all doing better!

Jump to this post

So sorry! I have very little quality of life as well and have questioned the value of living in this condition as well. I guess that's why it is written, "before MAC and after MAC." Especially hard for me is going from being the one taking care of everybody to the one being taken care of - But I am always hopeful that someone will find a cure. I trust God, never ask why, and keep putting one foot in front of the other as much as possible - one minute, one hour, one day at a time! Don't give up! This group is a wealth of information and good, honest support.

REPLY
boomerexpert | @boomerexpert | Jun 10, 2017

@internalmeddoc Good to know your research interest lies with this insidious infection, and thanks for participating.
May you and fellow researchers soon recognize that this has the potential to become an epidemic given that there is no reporting requirement as there is for TB and it is spread by the water we drink and the soil we till...far more folks are acquiring NTM's at a far faster pace than inadequate data collection indicates. And many folks have the infection yet don't know it. I was placed on a biologic for my RA with only a negative TB test...my Rheumatologist followed only the decades-old protocol, never updating himself even as he started seeing more patients w/MAC. I urgently suggested he add a CAT or MRI scan of the lungs as a matter of course before putting patients on immune suppressants; his response was to be more worried about the small of amount of radiation involved than the danger of not uncovering MAC prior to exacerbating it w/biologics. Hmmmm.... I'm seeking a new Rheumy...
Start educating your fellow physicians on the danger of this growing infectious disease. And keep the pressure on for more and better research, as new treatments are not forthcoming.
Thanks for your time with us.

REPLY
3 replies
tdrell | @tdrell | Jun 10, 2017
In reply to @internalmeddoc "I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI...." + (show)
@internalmeddoc

I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI. Would just like to mention that a sputum sample to detect MAC (AFB stain) is just an initial probe and not nearly enough to detect this disease in most cases, even when such sputum samples are repeated 3 or more times which is a good idea. Culture (AFB culture) is better and bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples. MAC/MAI is not always an easy disease to detect. Hope this helps.

Jump to this post

Wind Walker et al re how high to put water heater....at 140 Dr falkingham the microbiologist doing research on NTM discovered that a stronger heat resistant NTM formed...so they recommend 120 degrees .
tdrell

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