Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
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!
KateMN
Yes i dont want to do the biopsy im scared
When they scaped and brushed the area its shows no cancer
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Jo Ann K
@jkiemen
@jkiemen
Posts: 427
Joined: Jun 23, 2017
@mariierod123 This will be my second Biopsy. The first was in October of 2015. I don't want to do it either. But I think I need to know exactly what is going on with that area. They are sending the sample for culture to Jewish National.
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@mariierod123 This will be my second Biopsy. The first was in October of 2015. I don't want to do it either. But I think I need to know exactly what is going on with that area. They are sending the sample for culture to Jewish National.
What did it show in oct and did it hurt to do it?
Jo Ann K
@jkiemen
@jkiemen
Posts: 427
Joined: Jun 23, 2017
@mariierod123 The biopsy grew MAI and there was granuloma which is kind of like tissue that is engulfing the bacteria and kind of scarring. They use IV sedation to do it. It was a little sore afterwards.
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angiejohnson
@angiejohnson
@angiejohnson
Posts: 28
Joined: Feb 12, 2019
@angiejohnson …was your lobe removed via closed surgery or did you have the traditional open lobectomy???hope it heals well and helps the MAC situation….will they do cultures afterwards for follow up.?
And the Aurora ID doctor l went to in Grafton Wi was the one who automatically would have put me on the big three after one positive culture and no evidence on CAT scan….no would not go back to her ….also was sent in the Froedert system in West Bend a few years later (after I switched from Aurora Pulmonologist to Froedert one in West Bend) to a ID doctor ,…..a Dr Castro or something simililar….again he was nice and l think conscientious but not l sensed too aware of NTM protocol….wanted to treat me after one positive culture…and no CAT scan evidence….NJH for annual appt there again said "NO signs of infection" Tdrell aka Terri
@tdrell I had a robotic lobectomy. It’s healing nicely! I’m 10-11 days out and have been doing some laundry, taking short walks, moving about just fine. I have some minor pain still, but just taking Tylenol and muscle relaxer. My Pulmonologist said 2-3 months on medication. I don’t know if they will do cultures to determine when to stop. I may look into NJH for follow up.
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Jo Ann K
@jkiemen
@jkiemen
Posts: 427
Joined: Jun 23, 2017
@angiejohnson It sounds like you are doing really well. I really wish you the best and able to get off the meds
Sue, Volunteer Mentor
@sueinmn
@sueinmn
Posts: 805
Joined: Aug 12, 2018
@america Which Doctor? In 2012 I saw Dr. Arunthari there who only prescribed Levofloxacin if my cough got worse and albuterol inhalation (which I stopped because it made my heart race). So, over the years since, I probably took the antibiotic 10 times a year….but I wish we had known that it only treated symptoms and not the bacteria itself. I have suffered with MAC since 2006 and they knew I had it but that's all he did. Maybe that's all they knew to do back then. Haven't been back there since. Just got on the antibiotic regimen this past month following a bronchoscopy revealing nodules, etc. Already feeling much better!
I live in Longwood, north of Orlando. And you?
@hsletter Helen – there was a recent discussion about replacing albuterol with levalbuterol to address the rapid heart rate, tremors,etc. If your doctor thinks you would benefit from a nebuliser, you should address this issue. Levalbuterol is the generic form, much less costly than the original name brand Xopenex.
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Terri Martin, Volunteer Mentor
@windwalker
@windwalker
Posts: 3906
Joined: Nov 18, 2016
@mariierod123 I am proceeding with the biopsy. I want to make sure exactly what it is, what is the best antibiotic etc. My pulmonologist said. MAC makes nodules so this is part of the pattern. I was hoping the pattern would stop with the treatment I have been on already but it didn't happen. He said he it could be a granuloma.
@jkiemen, Hi Jo Ann, I just wanted to add that most people over the age of 50 have nodules in their lungs. Most of the time it isn't anything to worry about. Most mac patients have them, or have had them, or will get them. Mine come and go over time. My dr is not concerned with them. He is only concerned with keeping the mac and pseudo away. Please keep us posted.
angiejohnson
@angiejohnson
@angiejohnson
Posts: 28
Joined: Feb 12, 2019
@angiejohnson I hope you are doing well since your surgery. Could you tell me who you see at Froedert for Pulmonary? For ID I saw Dr Brummitt at St Luke's. His partner, Dr Buggy is also a very good physician but I fear no one is real great at treating MAI in this area of Wisconsin despite there being allot of it around. I live near the Delavan/Elkhorn area.
@jkiemen I thought I replied to you, but I’m not seeing it. I see Dr Randy Lipchik at Froedert. I would like to get an ID doc on board to make sure we get rid of this. I was first diagnosed 10 years ago at 37 y/o. I am doing really well after the right middle lobectomy. I’m 11 days out and walked .8 miles today! I still have mild pain that Tylenol and muscle relaxer has helped with.
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angiejohnson
@angiejohnson
@angiejohnson
Posts: 28
Joined: Feb 12, 2019
@jkiemen I thought I replied to you, but I’m not seeing it. I see Dr Randy Lipchik at Froedert. I would like to get an ID doc on board to make sure we get rid of this. I was first diagnosed 10 years ago at 37 y/o. I am doing really well after the right middle lobectomy. I’m 11 days out and walked .8 miles today! I still have mild pain that Tylenol and muscle relaxer has helped with.
Ok I am not losing it, I did reply to you! Haha
jasmine321
@jasmine321
@jasmine321
Posts: 33
Joined: Oct 18, 2018
Ok I am not losing it, I did reply to you! Haha
@angiejohnson My Pulmonologist and myID doctors are suggesting lobectomy also. This is my second MAC infection and bronchiectasis is getting worse. How long did you stay in the hospital? Did they place a chest tube after surgery? I am scared to have the surgery, but I think It makes sense to get it done. If brochiectasis is getting worse, it might affect my entire right lung if I keep getting infections. Don’t know what to do. I always pray that God will lead me to the right decision.
heathert
@heathert
@heathert
Posts: 626
Joined: Mar 07, 2016
@mariierod123 I think that is the hardest part. "Being scared". I feel like I spend so much time being scared of what next. I pray for all of us that one day there will be a breakthrough in treatment. I am supposed to be contacted by a clinical trial that may be starting in the 4th quarter of this year. I am hoping the FDA sees this as an important condition to treat. I guess we have each other because only we can understand what the other is going through.
@jkiemen yet the being scared is so awful and I think we have been thru it, and ongoing situation. Hopefully there will be a cure soooooon!
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angiejohnson
@angiejohnson
@angiejohnson
Posts: 28
Joined: Feb 12, 2019
@angiejohnson My Pulmonologist and myID doctors are suggesting lobectomy also. This is my second MAC infection and bronchiectasis is getting worse. How long did you stay in the hospital? Did they place a chest tube after surgery? I am scared to have the surgery, but I think It makes sense to get it done. If brochiectasis is getting worse, it might affect my entire right lung if I keep getting infections. Don’t know what to do. I always pray that God will lead me to the right decision.
@jasmine321 I don’t know if this is my second, or if the first never really went away. I was diagnosed, treated for 2.5 years, then “clear” for 6 yrs. My right middle lobe was filled with infection and bronchiectasis. I was scared also. They usually have the chest tube in for a day after surgery. It’s uncomfortable- probably worse than the incisions, but tolerable with pain meds and muscle relaxers. I should have gone home after 2 nights. Unfortunately when the PA pulled my chest tube, air leaked under my skin and I got subcutaneous emphasema, or crepitus. They had to put a chest tube back in to suction out the air. That caused me to be hospitalized 3 extra nights. I just had to stay positive and keep telling myself this will be over soon. You can do this!
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boomerexpert
@boomerexpert
@boomerexpert
Posts: 506
Joined: May 13, 2016
@angiejohnson My Pulmonologist and myID doctors are suggesting lobectomy also. This is my second MAC infection and bronchiectasis is getting worse. How long did you stay in the hospital? Did they place a chest tube after surgery? I am scared to have the surgery, but I think It makes sense to get it done. If brochiectasis is getting worse, it might affect my entire right lung if I keep getting infections. Don’t know what to do. I always pray that God will lead me to the right decision.
Prayers are great but nothing surpasses research…do your own on available treatments for your situation and their outcomes
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@mariierod123
Yes i dont want to do the biopsy im scared