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.

Melissa23 | @melissa23 | Jul 3, 2015
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.

Jump to this post

Hello DebyMacc, after confronting my doctors with my many questions about my infection and concerns about taking the antibiotics, they took me off of them...Now I am back where I started, maybe worse. Since I was treated for 5 straight months, battling the mycobacterium avium now the MAC will have an opportunity to regain its position and also build an immunity when/if they decide to start antibiotics again. Your doctors saved your life with treatment....I believe that mine are killing me.

REPLY
Paula_MAC-2007 | @Paula_MAC2007 | Jul 3, 2015
In reply to @blc "I found this discussion while researching side effects for the meds prescribed for MAC, and possible..." + (show)
@blc

I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can't imagine taking these meds for the next year or more!! I'm sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I'm a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B

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Jill, my pulmonologist mentioned several years ago that there is some connection between Vitamin D and MAC (or NTM). My Vitamin D count was originally at 4 and I have been treated by an endocrinologist for 2-3 years and it's now at 35! Great improvement. I was originally on the 3 drug MAC therapy every day for 2-3 years, got much better and went off them for 6 months and got real ill.

Since then, I've been on the 3 drugs EVERY OTHER DAY, 3 DAYS A WEEK. Boy, I can sure tolerate these MUCH better than every day! But I will probably be on these 3 drugs the rest of my life. I have periodic x-ray, CT scans or lung biopsies/washes every 12-18 months to check on the growth or decrease of MAC in my lungs. But today I am doing quite well.

Paula Stroud

REPLY
Jill T Payne | @jilltpayne | Jul 3, 2015
In reply to @blc "I found this discussion while researching side effects for the meds prescribed for MAC, and possible..." + (show)
@blc

I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can't imagine taking these meds for the next year or more!! I'm sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I'm a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B

Jump to this post

I went on-line to try to find the action of the Calcium D Glucarate, but it mainly said that it might be used in cancer. But I still have no idea how it helped me get through the devastating blow of all the antibiotics. After 15 months on three meds, I have not had a recurrence and not one episode of bronchitis. Perhaps I am just lucky, but I was never as bad as some have described in the posts on this site, so hopefully it is gone.<br />
<br />
Jill <br />
<br />
<br />
<br />
<br />
<br />

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Julia S | @jms64 | Aug 4, 2015

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.

REPLY
7 replies
Melissa23 | @melissa23 | Aug 5, 2015
In reply to @jms64 "I have been treated for Mac since 2010. Been on medication since with progressing side effects..." + (show)
@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.

Jump to this post

Hello Julia. The chest pain and discomfort that I experience is constantly isolated in my lower left lung and diaphragm. It feels almost as if my lung is 'rooted' into my ribcage when I breath, therefore I am always taking shallow breaths. In an effort to isolate the MAC in my sinus cavity, a sinus flush was recently performed, and instead of finding Mycobacterium avium, I have a colony of Mycobacterium terrae up there!

Is your CT Scan being performed WITH or without contrast? Please keep us posted with the results. I pray that you are on the mend.

Best wishes,,
Melissa

REPLY
Paula_MAC-2007 | @Paula_MAC2007 | Aug 5, 2015
In reply to @jms64 "I have been treated for Mac since 2010. Been on medication since with progressing side effects..." + (show)
@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.

Jump to this post

Julia, I periodically have aches or discomfort in my chest - had it years before MAC diagnosis. I also have lost half of my hearing, due to the drugs I'm on - am told it's a side effect of one of the drugs. But the drugs (and exercise and sleep/rest) have kept me well! Inhalers never worked for me - have tried 3-4 different ones. For me, I can't be outside when the dew point is high - causes real tightness and very shallow breaths. My blood work is monitored yearly and it's always been good - sounds like you have a tougher situation with MAC than me. I've adjusted very well although the first 2 years were really rocky. My advice -- find the BEST doctor who knows how to treat MAC, ask him/her tons of questions and follow their advice. My best to you.

Paula

REPLY
Paula_MAC-2007 | @Paula_MAC2007 | Aug 5, 2015

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

REPLY
2 replies
Melissa23 | @melissa23 | Aug 5, 2015
In reply to @Paula_MAC2007 "Melissa, you sure have my sympathies - - having MAC in your sinuses! I think it..." + (show)
@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

Jump to this post

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 🙂

REPLY
Katherine, Alumni Mentor | @katemn | Aug 8, 2015

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

REPLY
6 replies
Katherine, Alumni Mentor | @katemn | Aug 8, 2015
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.

Jump to this post

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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