(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.

@jamesoz

I am new to this forum and I am a 58 y/o white male, diagnosed with MAC via brochoscopy and sputum results just over 15 months ago. I also have bronchiectasis however I am on the mild end of the spectrum with very little in the way of symptoms. Very little dry cough, next to no sputum production, bouts of fatigue that pass and I am keeping a healthy stable weight. Not on medication yet, although that could change down the track. I am under the care of a lung specialist who has other MAC patients at a large hospital here in Sydney, Australia. My biggest test is that I am a depression/anxiety sufferer and when I am feeling low physically my mental state plummets. I just have to remember I am not alone on this journey, and the news of other sufferers helps me along.

James

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Melissa, I don’t know if this would help you at all .. BUT I cough horribly because the MAI/MAC left me with Bronchiectasis .. just constant coughing that racks my body. To the point my sacroiliac joint was painful. I purchased the below and wear it 24/7. I am 5’2 and 114# .. the sm/med fits me with 20″ extra at the end to give you an idea.

OPTP 671 Si-Loc Support Belt .. purchased at Amazon http://smile.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=OPTP+671+Si-Loc+Support+Belt+ (by the way: the “smile” portion is every dime I spend at Amazon .. a portion goes to our lung research! The “NTM Info & Research.org” .. if you purchase at Amazon .. check out donating to your chosen charity!)

I had an orthopedic surgeon tell me the SI joint is so tiny .. the belt could not possibly help. SORRY .. I don’t care .. all I know is that if I wear the belt .. raise one leg as I cough .. may look odd .. but it relieves my ribs/SI joint to a very bearable level. Plus the positive is that I have stomach muscles of IRON from the coughing! Hope this helps someone .. it has helped me.

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@jamesoz

I am new to this forum and I am a 58 y/o white male, diagnosed with MAC via brochoscopy and sputum results just over 15 months ago. I also have bronchiectasis however I am on the mild end of the spectrum with very little in the way of symptoms. Very little dry cough, next to no sputum production, bouts of fatigue that pass and I am keeping a healthy stable weight. Not on medication yet, although that could change down the track. I am under the care of a lung specialist who has other MAC patients at a large hospital here in Sydney, Australia. My biggest test is that I am a depression/anxiety sufferer and when I am feeling low physically my mental state plummets. I just have to remember I am not alone on this journey, and the news of other sufferers helps me along.

James

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Is your MAC in the upper portion of your lungs?

John

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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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@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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I would hesitate to give much “feedback” because your husband’s health is complex and so treating MAC will necessarily be the purview of the doctor who will have to decide if his liver can withstand the drugs that are needed to treat the MAC. They do check for liver enzymes when a person is on drugs that are generally used with this diagnosis. It is so difficult when at an older age one gets multiple diagnoses and treating everything is difficult. I wish you the best.
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@jamesoz

Katherine, thanks for the reply. My depression/anxiety, diagnosed as Cyclothymia (Cyclothymic Disorder), is something I have had nearly all my adult life. It stems from losing my brother when he was only 16 years old, I was only nearly 19 years old myself, then my Grandfather and father in a short number of years then the breakdown of my first marriage. I have no contact with my adult children or any grandchild, only my fabulous current wife of 28 years, and some friends to support me in my illness. And, that is more than many I suppose. I am starting to do some volunteer work, as I am a early retiree, and I try to keep my mind busy. It is too easy to lead a very insular life, and miss out on the fun of actually living. I have been told that MAC may be my cross to bear for the rest of my life, and that is a scary thought at times. However, life is there to be lived. It may not be quite what I thought it would be, but it is all I have.

James

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Thank you Katherine for the heads up on the lumbar / S1 support belt. It is in my Amazon Cart now! 🙂 I will also be looking for a lumbar support for my computer chairs for home and at work on Post, as I spend too much time in front on computers >_< on a daily basis. And James I am happy to hear that you have a 'Rock' and some friends to support you. What kind of Volunteer work do you enjoy? Having experience with persons who are afflicted with Cyclothymia, I know that two that are currently taking nothing but I believe it is 'Gaba' or/& a Theanine combo. One person with whom I have had contact with for years, has told me that the Theanine brand from Natrol available through the Vitamin Shoppe on-line is the BEST, Best wishes to ALL, With Love, Melissa

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@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!

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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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