(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

@onlywalther

My husband of 62 years was recently diagnosed. On top of MAC he has Marfan Syndrome. He has had two heart valve transplants, several strokes, bullectomy surgery and a pleurodesis in one lung. He is 6′-5″ and weighs 148 pounds. We meet with infectious diseases at Baylor Scott & White in Temple, TX this week. They will be testing his sputum for drug resistance prior to treatment. He was given 5-7 years with the last heart valve replacement which was 3 years ago. He has to be incredibly careful with medication because of potential affects to his liver. Our concerns are many. The length of treatment and side effects taking a toll on a person that does not have “reserves”. Would appreciate feed back. Thank you

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Good day Chaac2272, Where is your Husband being treated? My sputum was tested for drug resistance back in April 2015… and the results were ‘inconclusive’. There are several strands of MAC and therefore most doctors lump them under the category of MAI, and sometimes erroneously conversely. Has your Husband been tested for Alpha-1 antitrypsin deficiency? THis is an autoimmune disease that would explain why his Liver and his Lungs are being attacked and why his immune system is weakened, and unable to fight off the mycobacterium. If not, Start there. Ask your doctors to perform this genetic test.
Best wishes,
Melissa

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Hello ALL! It turns out that following my JUN2015 I had CT Scan and visit to Walter Reed Hospital the ARMY lied to me…AGAIN. THis time I imagine it is because they initiated medical separation because of my Raynaud’s Disease and did not want to compound their obligation because of the MAC I contracted during my Time in Service. The 12JUN15 CT Scan w/o contrast was explained to me by one CPT Micha Koren (most likely an intern at Walter Reed who has never seen MAC) as clear and with no evidence of active MAC. #1 Active MAC (according to NIH, MAYO, etc.) is classified not only by imagery results but moreover by Positive AFB Sputum Cultures! #2 My 12JUN15 CT Scan demonstrated “small focus of tree in bud type opacity/branching nodular densities in the superior segment right lower lobe”. Of course I find this out ON MONDAY NOVEMBER 02 2015! But it gets worse. The 12JUN15 CT Scan also revealed “Several stable too small to characterize hypodensities in the liver” which were not on the NOV 2014 or any other CT Scans. Fast forward to the 03SEP15 CT Scan and the former ‘hypodensities in the liver’ have evolved into “hypoattenuating, hypoenhancing cystic lesion in the left lobe of the liver”. Of Course when I followed-up with my Pulmonary Disease doctor (another Army doctor) on 16JUL, 13AUG, 01SEP and a telecon on 30SEP I was told that all was “clear” that my CT Scans were Normal.

Furthermore, they detected that I had fractured a Rib (most likely from coughing – thus the rib cage pain that I had discussed earlier in the post) and told me nothing of this either. I found out about this when I received my filing from the Physical Evaluation Board on 02NOV15 as well.

Today I am scheduled for a cervical biopsy. 43 days ago they detected a-typical cell growth in a PAP. Of course they did not call me to tell me. I had to go to my Congressman and Patient Advocacy to get the Results and Get the Appointment. It is the day of the procedure and as of this moment, they (Army MEDCOM) still has not called in the pre or post-procedure medications for me to take.

My Son left the Military, fulfilling his Duty and is now back in his Home of Record serving with the National Guard. He left Ft. Drum with a fractured femur, a torn ACL, he was hospitalized numerous times for Rhabdomyolysis, and probably many other things that I will never know about. My point here is off of the MAC discussion and on to the point that I believe the Army is trying to KILL ME – why else would they stop life saving treatment?

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Hi Melissa, wanted to tell you on the SI belt .. I cinch it VERY tight around my lower area .. jut above my buttocks .. that works for me. You might have to experiment to find out the best placement. I especially tighten it prior to bed because bedtime movement displaces it .. then I reposition it and retighten it the next morning. For me it has been a life saver .. I can really tell the difference when I cough without it!

I feel so sad for you in your situation .. just DO NOT give up the fight! If you do not get what you need from ” I had to go to my Congressman and Patient Advocacy to get the Results and Get the Appointment.” .. my advise would be to start calling EVERY television station in your area with your story .. tell them with the current VA and veteran health issues would they PLEASE at least take time to talk to you!! Don’t forget “The squeaky wheel gets the oil” as your grandmother used to say!! When the media gets involved amazing things happen .. ALSO .. call the City Desk at EVERY local newspaper .. either a television or a newspaper may pick this up. Try it! FIGHT. Fight NOT just for yourself .. but for EVERY service person and veteran not getting proper medical care! GO GIRL!

Sending you LOTS of positive energy and a big hug!
Katherine

MARCH 2016 UPDATE
I foolishly added a Kettle Ball to my exercise routine of Nordic Track and yoga. FOOLISH! I had immediate back pain! I rested .. took prescription anti inflammatory medication to no avail. After Xrays and helpful physical therapy I found the problem has NOT been my SI joint .. instead the proverbial lower back L4 AND L5 joints! After strengthening my lower back muscles through specific exercises AND continuing use of my SI belt I find my coughing does not aggravate my pain to the degree it was.

SO .. yes the SI belt GREATLY helps relieve the pain of the coughing .. but for me it was NOT the SI joint .. IT WAS the L4 & L5! Hmmm! Wanted to let you know!

Liked by Melissa23

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Just a bit of news from me in Australia. I have started on a three day a week walking regime, walking around 7 1/2 miles per outing. I have built up to walking at a reasonably fast rate, about 10 mph in US terms or 6.6 kph for the metrics. I am certainly feeling better for it. I wear a Fitbit watch which records heart rate, speed, distance etc so I can keep a record of my progress. I am now using a CPAP machine, as I have been recently diagnosed with sleep apnea. It takes some getting used to but I am starting to feel more energized during the day. Life is getting better, and my MAC symptoms are getting less.

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Such great news @jamesoz. Good for you! Thanks for taking the time to come back and share good news here on Connect.

I was resistant to wearing a fitness tracker, but recently I won a Basis watch. It has got me moving more and more. My sleep patterns have also improved. I no where near your fitness activity yet, so thank you for the inspiration. Exercise has always been my go to cure all. It feels good to get back to it.

PS: I should introduce myself to you and everyone I’m this thread. My name is Colleen and I’m the new Community Director for Mayo Clinic Connect. I look forward to getting to know you all.

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@jamesoz

Just a bit of news from me in Australia. I have started on a three day a week walking regime, walking around 7 1/2 miles per outing. I have built up to walking at a reasonably fast rate, about 10 mph in US terms or 6.6 kph for the metrics. I am certainly feeling better for it. I wear a Fitbit watch which records heart rate, speed, distance etc so I can keep a record of my progress. I am now using a CPAP machine, as I have been recently diagnosed with sleep apnea. It takes some getting used to but I am starting to feel more energized during the day. Life is getting better, and my MAC symptoms are getting less.

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I have found that physical activity is vitally important for improving quality of life in my lung-compromised situation. Anything that gets me breathing more vigorously seems to “clean out” my lungs, and I feel better and have more energy for hours afterward. I’m surprised the medical profession doesn’t promote exercise more – it’s clearly one of the best “medicines”! Thanks for your post – inspiring!

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Colleen, I ditto your thoughts on physical activity being vitally important for those with MAC. And I too wonder why the medical profession doesn’t promote exercise more!! I’d love a script from my Doc saying I need Pilates 3 times a week!! A year after being diagnosed with MAC, I started taking Pilates at work (2-3 times a week, 45 minutes each time). I worked at a University and during the summer, Pilates was only offered once a week. My lung function gradually got better over the years and then over the summer my progress receded – my pulmonologist could tell and I didn’t feel as well. Since I retired last May, I have joined a fitness club that offers Pilates 4 items a week – I really can notice the difference in how much better my lungs are doing because I am engaged in exercise that gets the ‘junk’ out of my lungs and builds up my lung stamina. But it was a gradual evolution over quite a few years– I started very small, doing what I could do.

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@jamesoz

Just a bit of news from me in Australia. I have started on a three day a week walking regime, walking around 7 1/2 miles per outing. I have built up to walking at a reasonably fast rate, about 10 mph in US terms or 6.6 kph for the metrics. I am certainly feeling better for it. I wear a Fitbit watch which records heart rate, speed, distance etc so I can keep a record of my progress. I am now using a CPAP machine, as I have been recently diagnosed with sleep apnea. It takes some getting used to but I am starting to feel more energized during the day. Life is getting better, and my MAC symptoms are getting less.

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I am REALLY impressed with your 7.5 miles per outing! WOW! I was one of the original participant (still am involved in) the Women’s Health Initiative that has charted women’s health over the years .. am very proud of trying to help future generations. They now have a new research initiative “WHISH” that involves researching around the amount of exercise done versus health. I agreed to be a part of that also.

Seeing your post .. it is helping me MAYBE attempt to increase my activity! I have been doing Nordic Track (a cross country ski machine) for nearly 40 years .. stopping only for about 3 years when my back was so painful from the MAI/MAC coughing. Prior to stopping .. exercise was like brushing my teeth .. just part of my life. It was amazing how hard it was to get “back in the saddle”! SO easy to put it off and not prioritize it. So reading your post .. I am REALLY going to try to harder! If you can do 7.5 miles .. I can get my fanny in gear! Thanks for your post!

p.s. my husband uses a sleep machine .. he has had to try SEVERAL different masks to really get the right fit that will allow him to use the machine all night. If your current one doesn’t feel quite right .. try another .. plus my husband has discovered they wear out .. need to be replaced periodically as the “fit” kind of gets poor. This did not happen however for many months.

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@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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The best thing that happened to me was switching to a medical university Shands in Gainesville who still treat me but referred me to National Jewish in Colorado. I live in Fl. My first visit was for 10 days where they run tests on you from early morning until 4 or 5 at night. At the end of all testing it was determined I would be a candidate for a left lingula lobectomy and later a r middle lobe. Both of these areas now had M abscessus and were damaged from the bronchiectasis. Neither was working they were actually dead tissue. One they were removed it removed most or all hopefully of the disease. The surgeon I had was Dr John Mitchel of the University of Colorado. He is a well know surgeon who specializes in VATS surgery which is less invasive.
National Jewish is the top know hospital for Mac.as well as oter lung issues. I flew there by myself to save money on airfare and hotel costs and the hotel had a van that took you back and forth for free. I know this seems expensive and alot to do but it is your health we are talking about.

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@debbiet

I am looking for patients that have MAC to learn about their meds and sidemeffects

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Hi @debbiet,
Have you seen the great group of people sharing about MAC on this Connect discussion thread? https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

Please click on the link and join in. All welcome.

Colleen
Connect Community Director

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@nikolaiw

Hello All, I’ve been reading this section and am quite glad to have found it.
I discovered I have MAI/MAC just this February as I was turning 65 and retiring. They found it while trying to figure out what was triggering a glow in the PET scan other than the lung cancer they had just found in the other lung.
I’m now down to 1/2 a lung on the left side and about 3/4 on the right side due to the MAC cavitation. I’m also on chemotherapy, since they found cancer cells in 1 of 13 lymph nodes when they removed the cancer. Since the chemotherapy kills off white cells, the MAI has been taking hold again. So, yesterday I began the 3 antibiotic treatment in addition to chemotherapy.
I was doing a search and found this topic because I was trying to find out what others had been doing to deal with the side affects of the 3 antibiotic treatment. (I’m on azithromycen, rifabutin and ethambutol, daily). So far I’ve noticed that putting something in my belly before and after seems to be mandatory. Yogurt (greek) seems to help a lot. Also, I’m glad to see the comments regarding vitamin D. My regular physician was looking into a vitamin D shortage when this all started.

Fortunately I’ve found a real good pulmonologist here in central Florida that I have a lot of faith in and she’s taking very good care of me. At least I think she is.

Anyway, I just wanted to thank you all for sharing your experiences with this and also let you know how much I appreciate that. It also helps explain why I’ve been feeling so darned tired the last couple days.

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Hello Nick and Paula, Please tell me the name of your Pulmonologist from Central Florida I am in need of one I am presently being tested at National Jewish Health but I cant stay here indefinitely. My home is in Central Florida. I sure hope the best for all of you, as I truly understand the difficulties involved with this disease. I am quite weary and hold on to my faith to get me through all the unknowns and trials. Thank you for sharing.

Liked by Paula_MAC-2007

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@nikolaiw

Hello All, I’ve been reading this section and am quite glad to have found it.
I discovered I have MAI/MAC just this February as I was turning 65 and retiring. They found it while trying to figure out what was triggering a glow in the PET scan other than the lung cancer they had just found in the other lung.
I’m now down to 1/2 a lung on the left side and about 3/4 on the right side due to the MAC cavitation. I’m also on chemotherapy, since they found cancer cells in 1 of 13 lymph nodes when they removed the cancer. Since the chemotherapy kills off white cells, the MAI has been taking hold again. So, yesterday I began the 3 antibiotic treatment in addition to chemotherapy.
I was doing a search and found this topic because I was trying to find out what others had been doing to deal with the side affects of the 3 antibiotic treatment. (I’m on azithromycen, rifabutin and ethambutol, daily). So far I’ve noticed that putting something in my belly before and after seems to be mandatory. Yogurt (greek) seems to help a lot. Also, I’m glad to see the comments regarding vitamin D. My regular physician was looking into a vitamin D shortage when this all started.

Fortunately I’ve found a real good pulmonologist here in central Florida that I have a lot of faith in and she’s taking very good care of me. At least I think she is.

Anyway, I just wanted to thank you all for sharing your experiences with this and also let you know how much I appreciate that. It also helps explain why I’ve been feeling so darned tired the last couple days.

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I am also in Central Fla and I go to University of Fla at shands in
Gainesville. I had a Dr Fennelly who was excellent and specializes in MAC,
he was the director of Nontuberculous Mycobacterial Disease program but he
has moved on so now seeing another dr there who also seems quite good. has
replaced him. Dr. Moguillansky . Their phone if you are interested is 352
265 0139

Liked by Paula_MAC-2007

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Thank you so much I will call today!

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@nikolaiw

Hello All, I’ve been reading this section and am quite glad to have found it.
I discovered I have MAI/MAC just this February as I was turning 65 and retiring. They found it while trying to figure out what was triggering a glow in the PET scan other than the lung cancer they had just found in the other lung.
I’m now down to 1/2 a lung on the left side and about 3/4 on the right side due to the MAC cavitation. I’m also on chemotherapy, since they found cancer cells in 1 of 13 lymph nodes when they removed the cancer. Since the chemotherapy kills off white cells, the MAI has been taking hold again. So, yesterday I began the 3 antibiotic treatment in addition to chemotherapy.
I was doing a search and found this topic because I was trying to find out what others had been doing to deal with the side affects of the 3 antibiotic treatment. (I’m on azithromycen, rifabutin and ethambutol, daily). So far I’ve noticed that putting something in my belly before and after seems to be mandatory. Yogurt (greek) seems to help a lot. Also, I’m glad to see the comments regarding vitamin D. My regular physician was looking into a vitamin D shortage when this all started.

Fortunately I’ve found a real good pulmonologist here in central Florida that I have a lot of faith in and she’s taking very good care of me. At least I think she is.

Anyway, I just wanted to thank you all for sharing your experiences with this and also let you know how much I appreciate that. It also helps explain why I’ve been feeling so darned tired the last couple days.

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In the Orange City/Lake Mary area (Volusia County/Seminole County), Dr.
Karuna Ahuja.
http://www.FLHeartLung.com

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@colleenyoung

Such great news @jamesoz. Good for you! Thanks for taking the time to come back and share good news here on Connect.

I was resistant to wearing a fitness tracker, but recently I won a Basis watch. It has got me moving more and more. My sleep patterns have also improved. I no where near your fitness activity yet, so thank you for the inspiration. Exercise has always been my go to cure all. It feels good to get back to it.

PS: I should introduce myself to you and everyone I’m this thread. My name is Colleen and I’m the new Community Director for Mayo Clinic Connect. I look forward to getting to know you all.

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Hi Colleen. I am about to be undergo another round of sputum cultures in a ‘unorthodox military setting’ to see if I am still producing positive AFB compared to my last round of cultures which were performed in May 2015 (they were all positive). My most recent CT Scans (July 2015 without contrast) evidences ‘tree in bud opacity/branching nodular densities in the superior segment right lower lobe’ with no “new nodules” compared to the 2014 CT Scan which did NOT have tree-in-bud opacities, but did “redemonstrate biapical chronic lung changes” from 2011 CT Scan, “reticulonodular, interstitial, pleruparenchymal opacities in both lung apicies”.

I am dealing with people down here who have no clue what MAC is and are too proud to admit that they have no idea how to identify or treat it. They only treated me with two antibiotics almost five months before taking me off of them. This was all after a TB misdiagnosis following a 21mm PPD in 2011, and treatment with Isoniazid for nearly 6 months, further building the resistance of the Mycobacterium avium to the proper treatment.

I have written my Congressman, Thomas Massie in Kentucky, for a review of my condition and to “Trust but Verify” the claims and treatment (the lack thereof) by the Army MEDCOM providers. To date, I have been able to secure a second opinion with an insurance authorization to have: ONE appointment with a Pulmonary Disease doctor and ONE appointment with an Infectious Disease doctor both at UNC in Chapel Hill.

Based on your experience, is there really anything that can be accomplished in ONE appointment for a MAC infection? What do I need to ask these doctors to do that the Army medical team is not doing?

The Army has provided me with Reports but NOT imaging of my most recent CT Scans, so that I can take them to the appointments. I will also take all blood work and sputum results with me to the appointments.

Thank you for any guidance you may be able to provide.

Very respectfully,
Melissa

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