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.

kathyhg | @kathyhg | Jun 14, 2020

I’m curious about inflammation that accompanies Mac. I’ve had problems with ear and sinus congestion and the ENT told me that the inflammation goes with Mac and I’d always have it. Yikes. I started taking a cortisone nasal spray and a sort of allergy medication that reduces inflammation but hate to take them long term. I also started taking curcumin/turmeric extract so hoping that helps.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jun 14, 2020
In reply to @kathyhg "I’m curious about inflammation that accompanies Mac. I’ve had problems with ear and sinus congestion and..." + (show)
@kathyhg

I’m curious about inflammation that accompanies Mac. I’ve had problems with ear and sinus congestion and the ENT told me that the inflammation goes with Mac and I’d always have it. Yikes. I started taking a cortisone nasal spray and a sort of allergy medication that reduces inflammation but hate to take them long term. I also started taking curcumin/turmeric extract so hoping that helps.

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@kathyhg I'm not sure which comes first - the MAC or the inflammation - but they sure seem to go together. My primary doc urges me to keep taking localized meds that reduce inflammation, like the steroid nasal spray, instead of systemic NSAIDs like ibuprofen, or oral steroids, because keeping inflammation down helps ALL parts of the body. When I get an asthma flare, my arthritis gets much worse, and vice versa.

As far as sinus/ear congestion, consider asking your ENT about routine use of guaifenesin (Mucinex) - I have had chronic ear problems my entire life, and as long as I take it regularly I get by with maybe only one ear or sinus infection per year, usually after a cold. At one point I had 11 ear and/or sinus infections in 2 years and seemed to be on antibiotics constantly; I have taken it for 30 years now with no ill effects.
I wish the homeopathic anti-inflammatories would work for me, but I haven't found one yet that I could tolerate and it helped.
Let us know if it helps you.
Sue

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kathyhg | @kathyhg | Jun 14, 2020

I’ve taken guaifenesin in cough medicine when I had neverending pneumonia prior to my Mac diagnosis. It loosens secretions so make sense that it helps to keep your ears/sinuses clear. Thanks for the info!

The oral medication that I’m taking with the nasal spray is montelukast or the oral form of singulair. It does help but I still have popping in my ears, as if I’ve been swimming. That really hasn’t changed so I’ll report it to ENT and ask about mucinex when I see him in August. I’ll need to look at something else if the ear congestion isn’t resolved by then.

My interest in more natural anti-inflammatories is that I’m still nervous about long term prescription meds after having side effects to azithromycin.

Thanks, as always, for the helpful information.

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poodledoc | @poodledoc | Jun 14, 2020
In reply to @windwalker "Hi Lori. I love that you enjoy researching things for this group. I read the link..." + (show)
@windwalker

Hi Lori. I love that you enjoy researching things for this group. I read the link from Micrbion and added 'pravibismane' to my list of new meds. I wonder if anybody is using that other recent drug (glatiramer)that held promise for keeping that hard cell wall formation from happening?

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Terri can you give us some information on this new drug Glatiramer. I can only find where it is used for MS patients. Thanks

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heathert | @heathert | Jun 14, 2020
In reply to @windwalker "Hello Heather! Will you be trying out that new treatment with the Trikafta?" + (show)
@windwalker

Hello Heather! Will you be trying out that new treatment with the Trikafta?

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Hi Terri @windwalker I would love to if I get the chance. I havnt told my specialist about it yet, hopefully she already knows! Dependent on if our Pharmac approve the funding for it, which hasn't been done yet (very expensive). So great that these new meds are making it to market.

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kathyhg | @kathyhg | Jun 14, 2020

I’m reading about glatiramer but only see information related to MS. What would you use it for?

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pamelasc | @pamelasc1 | Jun 21, 2020
In reply to @windwalker "Hi Pam! What did you think of the prednisone? Did you find that it helped you?..." + (show)
@windwalker

Hi Pam! What did you think of the prednisone? Did you find that it helped you? I have a bottle of it myself to keep on hand if I feel I ever need to be on it. I use it approx once a year. I love the stuff; too bad it isn't good for us long term. I only stay on it a week, and it gets rid of all inflammation, even my arthritis in my hands. It makes me feel energetic and healthy. Using it short term shouldn't be so disconcerting; it is the long term use that starts to destroy organs like your liver.

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The prednisone really did not make a dent on my breathlessness but glad I tried it, as it is supposed to reduce inflammation. I did send in a sputum sample last week and just today got the news that I have a bacteria called "Achromobacter". This may very well be the culprit. Has anyone out there been diagnosed with this? The best drug to treat this is Bactrim from what I understand. If anyone has anything to offer in the way of experience or information on this bacteria, please let me know. Thanks, Pam

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lindam272 | @lindam272 | Jun 21, 2020

@pamelasc1 - That's a new one on me! Keep us posted please and good luck with your healing. I'm glad they figured out what was causing your symptoms. Linda

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janrn1 | @janrn1 | Jun 22, 2020
In reply to @melissa23 "Hello my comrades with MAC. I am Active Duty military and frustrated with my limited access..." + (show)
@melissa23

Hello my comrades with MAC. I am Active Duty military and frustrated with my limited access to answers about my infection.

I had a >21mm PPD in 2011 along with gross reading CT Scans and misread chest x-rays. For three months in 2011 I was treated for Latent Tuberculosis then released from treatment after I demanded a QuantiFERON TB test which came back negative for TB.

In 2014, my body finally deteriorated to the point that my neurologist addressed my persistent cough and ordered an AFB sputum culture – Positive for Mycobacterium avium. My doctors act as if they have never seen the manifestation of this infection. My CT Scans have revealed “reticulondular, interstitial, pleuroparenchymal opacities in both lung apices” and x-rays range in readings from “mild, bilateral nodular changes in the lung apices” and “biapical pleural thickening”, to “the lungs are normal in appearance without evidence of active disease”. It seems that “normal” was much easier to deal with than the potential of missing the infection back in 2011.

I am currently on 2 antibiotics (azitrthromycin 500mg 3xs a week and rifampin 600mg 3xs a week) and have been since FEB 2015, yet sputum cultures continue to come back Postive.

Has anybody out there had AFB cultures to determine if the MAC is in their Blood & Urine?

Had anybody out there had their M. avium subspecies identified?

To aggravate matters more, I am told that the MAC is not in my lungs. My doctors are thinking of discontinuing the “toxic” antibiotic treatment. Over the past three years I have developed SVT, Raynaud’s disease, migraines, levido reticularis, vulvudynia, unspecified diffuse connective tissue disease and now I have left-side-facial muscle pain/droop and similar pain/swelling/immobility in my right hand.

I have asked the Military to Please send me to see Dr. Timothy Aksamit at the Mayo Clinic.

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Hi, I saw your post and am interested in how you feel now? Did you get a negative sputum culture back after treatment? My Dr.'s do not want to treat it. I would love to know how you are doing. Thanks, Jan, from VA

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jun 22, 2020
In reply to @janrn1 "Hi, I saw your post and am interested in how you feel now? Did you get..." + (show)
@janrn1

Hi, I saw your post and am interested in how you feel now? Did you get a negative sputum culture back after treatment? My Dr.'s do not want to treat it. I would love to know how you are doing. Thanks, Jan, from VA

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@janrn1 Jan, How are you doing? Even though your docs have decided not to start antibiotics, do they have you doing anything else like airway clearance to keep things from worsening? How are your symptoms? Have they said how they plan to monitor to see if treatment is needed in future?
Wow, I just asked a lot of questions, but inquiring minds...
Sue

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