(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

Melissa, you sure have my sympathies – – having MAC in your sinuses! I think it takes a really observant clinical tech – and perhaps excellent equipment – to differentiate between avium and other types. Are you still on Active Duty military? Where are you getting treated? Sure hope you are getting better.

Paula

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@Paula_MAC2007

Melissa, you sure have my sympathies – – having MAC in your sinuses! I think it takes a really observant clinical tech – and perhaps excellent equipment – to differentiate between avium and other types. Are you still on Active Duty military? Where are you getting treated? Sure hope you are getting better.

Paula

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Mycobacaterium avium and Mycobacterium terrae at completely two different strains of mycobacterium, not sub-species. So the MAC is isolated somewhere between my bronchial passages and lungs, while the M. terrae is in my sinus cavity. I am still active duty, although not very ‘active’. As for where I am being treated… I almost scoff at that question, I am asking my Congressman the same question. Thank you for your concern. And I do hope to be feeling better. The weekends are good to me because I can SLEEP and Nap and Sleep some more 🙂

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Melissa, I so understand how tough it is to have not just one but two! Mine was: *MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) (08/07 CULTURE) (09/11 began antibiotic treatment) and then * MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES (09/11)

Mayo Clinic at Rochester MN told me that my second mycobacterium diagnosed in 2011 was the most serious of the two (despite it being classified as a “subspecies”) and that I really must go on the antibiotics after waiting since being diagnosed in 2007.

But be assured .. after being on four antibiotics for thirty months .. I have had negative cultures since May 2014. I am blessed in finding a doctor at Mayo who specializes in MAI.

I won’t kid anyone going through this. I was so sure that all the coughing was caused by the MAI. Ok .. then when I went off the antibiotics in MAY 2011 .. why the horrific coughing?? Then I start researching the Bronchiectasis I also noticed on my medical records but ignored because the MAI was so serious.

Then was told they really don’t know .. chicken/egg scenario. MAI/Bronchiectasis. Which comes first .. which leads to the other? Do you develop Bronchiectasis first .. the mucus stays in the bronchial tubes and becomes a breeding ground for the mycobacterium .. OR does the MAI come first and develops into the Bronchiectasis? The doctors do NOT have an answer.

BUT Bronchiectasis did not seem the only answer because my coughing seemed to be SO triggered by certain things .. to me it seemed like dust .. etc. I then saw an Environmental Pulmonologist at Mayo Clinic who pointed out another thing on my medical record: Reactive Airway Disease. WHAT??? Another thing I had just ignored because of the other pressing medical issues? Yep! Well I was just positive I could get a “quick fix” by seeing an Allergist .. getting two dust mite allergy shots per week for 12-16 weeks and get FIXED!! No more coughing!

Nope! After allergy testing I was SHOCKED to find I do NOT have a dust mite allergy. The wonderful allergy doctor explained it thus: If someone hits you on the head .. you are not allergic to being hit on the head .. you are just reacting to being hit on the head so you have to avoid being hit on the head!!

This was greatly dismaying to me as I wanted my “quick fix” but finally it did make sense to me. I would just have to find a way to avoid dust mites because there is no quick fix for me. I will not bore you with the HUGE effort I have taken but I am now using a multitude of products and procedures .. it has helped but has not eliminated the coughing.

So for those of you still dealing with the beginnings of MAI .. I do not want to discourage you .. but I also don’t want to pretend the journey is without difficulties. What I will say is this .. when I was diagnosed a wonderful person told me: “If we all put our troubles in a great big circle .. more than likely most of us would take back our own troubles.” My husband and I then reminded us that we have not lost a child .. we have not lost a grandchild .. THAT would be a trouble. We will take back our troubles with an attitude of gratitude. I hope you can also. With hugs and well wishes for you all .. I know I have not written in a long time .. my husband is now in Stage 4 cancer .. but doing well so far with a new type of chemo.
Katherine

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@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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Melissa,
I just saw your post on Dr. Aksamit. FIGHT to get to him! He is the absolute GURU of MAI!! He is on the National Board and is absolutely wonderful!! I go to him and think the man absolutely walks on water! I adore him. When I was SO afraid to go on the antibiotic .. now I am choking up just remembering this .. he took my hand in his .. looked me in the eye and said “We will walk this walk together my Friend.” .. and Melissa he DID. For all those long months .. I was on the antibiotics for thirty months .. BUT now I have been off since May 2014. FIGHT TO SEE HIM!! It is your life and health!! Go to the media if necessary .. the VA is not in too good a light right now .. AND the public stands behind the military BIG TIME! Tell the Bigwigs you do NOT want to go to the media .. but that you also don’t want to die .. their choice!! Stand up for yourself!

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Katherine, you sure have your hands full, with your variations of MAC and Bronchiectasis, and your husband’s very serious cancer!! Blessing to both of you.

I have been on the 3 antibiotics since 2007 and probably will be for the rest of my life. Went off for 3-4 months and got very sick again. But I am feeling quite well these days, as long as I follow: 1) taking the meds as prescribed 2) exercise to get my lungs opened up 3) get enough sleep/rest. Managing this disease will be life-long for me. I have a great pulmonologist at a university teaching hospital. Humidity and high dew points affect my lungs, probably like your dust mites. But I’d MUCH rather have MAC/MAI than a stroke or cancer. Yep, you are so right about ‘taking back our own troubles’. The disease IS manageable … it just takes some adjustments to my life to get it right and accept the limitations it brings (limited lung function).

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Melissa, katemn (Katherine) recommends her doctor, Dr. Aksamit. I agree that you should move heaven and earth to have the military get you in to see him. A great doctor can help you turn the corner on this disease.

I wonder why we can’t all get in some type of study for MAC/MAI … find some commonality in why WE ALL have this disease. I live in SE Wisconsin, maybe 6-7 hours from the Mayo Clinic, but would LOVE to participate in a study. Keep us posted about your health and outcome! Am thinking of you.

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Paula, good for you that you take such good care of yourself with your exercise! With all that has been going on in my life I have fallen down on that and I KNOW I need to make that a priority to keep my lungs healthy .. get back on my Nordic Track! I have been VERY blessed to be totally off antibiotics since May 2014 and since this disease can only be stabilized .. not cured .. we all need to be alert to taking care of not only those around us but also pay attention to our own health. Thank you for reminding me!
Serenity and well being to all of us!
Katherine

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Bless you Katerine for your shared inspiration! I to back to my backwoods (LoL) infectious disease doctor in two weeks. He is a very nice doctor, but he specializes in HIV and other diseases, I believe I know more about MAC than he does. The VA lists, MAC as an ‘Emerging Disease’ and with that I have written my Congressman again, this time sending copies to the CDC and the NIH trying to get some pressure on the Military to send me to the Mayo Clinic to see Dr. Aksamit. In the mean time….I will continue to take shallow breaths, keep coughing this stuff up, knock my fevers and Drive On!!! 🙂

Have a blessed day all!
Best wishes
Melissa

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@melissa23

Bless you Katerine for your shared inspiration! I to back to my backwoods (LoL) infectious disease doctor in two weeks. He is a very nice doctor, but he specializes in HIV and other diseases, I believe I know more about MAC than he does. The VA lists, MAC as an ‘Emerging Disease’ and with that I have written my Congressman again, this time sending copies to the CDC and the NIH trying to get some pressure on the Military to send me to the Mayo Clinic to see Dr. Aksamit. In the mean time….I will continue to take shallow breaths, keep coughing this stuff up, knock my fevers and Drive On!!! 🙂

Have a blessed day all!
Best wishes
Melissa

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Melissa, I don’t know if this might help you .. it might ONLY apply to MY health situation .. but it might help point your doctor in a direction of type of meds. You might also google the meds and educate yourself .. but ALSO understand all the horrific side affect do NOT happen to everyone!! These meds stabilized me with VERY few side affects .. sleep disturbance/some fatigue/time and bother of the inhaled Amikacin .. but I can’t really think of much else. As far as I am concerned a small price to pay for my current better health!
My meds prescribed for me by Dr. Aksamit were daily:
Azithromycin 250mg/
Avelox 400mg/
2-Rifampin 300mg/
Amikacin 2ml-inhaled 3x week

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@jms64

I have been treated for Mac since 2010. Been on medication since with progressing side effects from the drugs. I was taken off the medication in June. Since that time the cough has returned along with some bloody sputum. Had another CT last week and return to the doctor tomorrow for more evaluation. Do any of you have chest pain or discomfort with this disease? I do not have this problem while on the medication. Now that I am off of it I am experiencing the tightness and pressure in the chest area. It also has gone into COPD. Use an inhaler. Weight loss and the medication has lowered my white count and plat.

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Hi everyone
After being diagnosed with MAC in the beginning of 2015 I have now
been diagnosed with TB and are on the meds for 2 mnths. I have been
in hospital for a week with pleurisy. The pain in my lungs are
killing me. I just feel sick the whole time. I am sick and tired of
being sick and tired!!!!!

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New to the site. My story is similiar to many others. Was diagnosed in 2009 after coughing blood. First was told I had phemonia and bronchietasis, was given AB and sent home. Took over a year of different Dr’s to agree to CT scan. I was on the 3 drugs for 2 years, seemed stable, they took me off meds, MAC came back after 6 months, stable after a year, then went to 3 days a week only, good for another year, then it came back again. Now we’re probably going back on every day. Most times I feel pretty good. Never thought I’d be on these drugs for over 6 years. I know there are worst thing to have but it’s frustrating because most people have never heard of this nor I ever meet anyone who has had MAC. I read you were wondering what commonality MAC patients have, my suspicion is it may have some relationship to menopause hormone depletion. About the same time I had MAC symtoms I suffered hair loss and was told I needed hormone therapy since my levels were so low. Perhaps the lack of hormones create an immune disorder or very low resistance to infection. Just a though. Anyways, look forward to continuing everyone”s progress and stories.
Thanks for listening.

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@suttonmac2009

New to the site. My story is similiar to many others. Was diagnosed in 2009 after coughing blood. First was told I had phemonia and bronchietasis, was given AB and sent home. Took over a year of different Dr’s to agree to CT scan. I was on the 3 drugs for 2 years, seemed stable, they took me off meds, MAC came back after 6 months, stable after a year, then went to 3 days a week only, good for another year, then it came back again. Now we’re probably going back on every day. Most times I feel pretty good. Never thought I’d be on these drugs for over 6 years. I know there are worst thing to have but it’s frustrating because most people have never heard of this nor I ever meet anyone who has had MAC. I read you were wondering what commonality MAC patients have, my suspicion is it may have some relationship to menopause hormone depletion. About the same time I had MAC symtoms I suffered hair loss and was told I needed hormone therapy since my levels were so low. Perhaps the lack of hormones create an immune disorder or very low resistance to infection. Just a though. Anyways, look forward to continuing everyone”s progress and stories.
Thanks for listening.

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It appears to me that the med’s may be a life long thing. Does anyone have low white cell and platelets after being on the med’s for over three years ? I went off the med’s for a few months to give my body a rest and see if my blood count goes up.

Julie

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