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
Helen L/Orlando
@hsletter
@hsletter
Posts: 10
Joined: Mar 01, 2019
@america Hi jkiemen. I also took the big 3! I only did 6 months and my scans also showed some some better and some worse. I even had cavities in there. That’s 4 years ago and then I wasn’t being treated until last year. I also have pseudomonas and I am now being treated for that. I am now at at Mayo Clinic and my doctor is great with Mac so I have hope and I don’t always have the best report but I am looking forward to enjoying life whenever I have good days. Mac is still growing slowly in my lungs and I’ll need to treat soon. Hang in there! This is a long journey and with friends in this group it’s is encouraging. I wish you the best! Hugs to you Rita.
@america. Which Mayo Clinic do u go to and who is the doc please?
america
@america
@america
Posts: 128
Joined: Jun 26, 2018
Jo Ann K
@jkiemen
@jkiemen
Posts: 411
Joined: Jun 23, 2017
@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.
Helen L/Orlando
@hsletter
@hsletter
Posts: 10
Joined: Mar 01, 2019
@america Hi I go to Jacksonville Mayo!!
@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?
america
@america
@america
Posts: 128
Joined: Jun 26, 2018
@hsletter @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?
I have dr leventhal! He knows more than any dr I’ve seen in the past. He gives me choices and he’s very caring! I see him next month and we’ll discuss treatment for Mac! I hope for the best and see what comes up! I also live in the Tampa area so you somewhat close 🙂
Helen L/Orlando
@hsletter
@hsletter
Posts: 10
Joined: Mar 01, 2019
@america I have dr leventhal! He knows more than any dr I’ve seen in the past. He gives me choices and he’s very caring! I see him next month and we’ll discuss treatment for Mac! I hope for the best and see what comes up! I also live in the Tampa area so you somewhat close 🙂
@america I have heard he is good. All the best! It will be interesting to hear what he says!
Jo Ann K
@jkiemen
@jkiemen
Posts: 411
Joined: Jun 23, 2017
@boomerexpert You've been poorly or mis-medicated…also recommend you find new doc who fully understands MAC and latest science of it.
@boomerexpert The problem I am running into is our insurance doesn't cover any really good experts in this field. I suppose I could call the insurance company and let them know what the situation is to see if they would allow other provider. I guess I could go to out of network provider and pay the large copay. Has anyone that is from Wisconsin seen an expert in Wisconsin or has Mayo clinic been the closest?
tdrell
@tdrell
@tdrell
Posts: 503
Joined: Aug 21, 2016
@jkiemen @boomerexpert The problem I am running into is our insurance doesn't cover any really good experts in this field. I suppose I could call the insurance company and let them know what the situation is to see if they would allow other provider. I guess I could go to out of network provider and pay the large copay. Has anyone that is from Wisconsin seen an expert in Wisconsin or has Mayo clinic been the closest?
@jo ann k….l am from near Milwaukee in Wisconsin…,,,the Aurora system infectious disease dr was about to put me on the big three antibiotics after one culture of MAI taken on bronchoscopy…..l had already gone to NJH workshop on NTM in Denver….coincidently was visiting daughter in Denver when the workshop was being held. So I told the ID doctor from Aurora that l was getting second opinion…..lthink there are a few more in this group from Wisconsin…what did they do????
By the way….on the second day of the 2 week scheduled visit to NJH they told me l DID NOT HAVE the infection but my cough and the positive culture was due to
-we in Wisconsin are considered by ATS as hot spot for NTM….it is in soil water and sometimes air
– due to my GERD l had aspirated the MAI from stomach into lungs hence found on bronchoscopy….but no signs of it /bronchiestasis on CAT scan.
I am followed annually and now every two years to be thorough and l have other stuff they follow…tdrell aka terri
becky33
@becky33
@becky33
Posts: 14
Joined: Apr 04, 2017
Dr. Adam Anderson at Washington University, St. Louis, Mo had me take 3 sputum tests one month apart and all 3 had to be positive before he would put me on the 9,300mg of antibiotics per wk. I had a sputum test every month until I had a negative sputum test for MAI. It took 15 months for the first negative. Dr. Anderson said it usually takes about 1 yr for the meds to work and you get a negative. I was getting worried that I was one of the "untreatable" one's but finally did get a negative in the 15th month. Dr. Anderson, then wants you to stay on the big 3 for 12 mo's after the first negative. I finished the 27 months of antibiotics last night!!!! yeah!!! Dr. Anderson has ordered a CAT scan of my lungs and a lung function test next Tues. Tonight my ins company Aetna/Medicare through BP Amoco called to say they will not pay for the CAT scan without a chest xray in the last 6 mo's. Will call Dr. Anderson's nurse tomorrow and I'm sure she will handle this for me. I have never called Dr. Anderson's nurse Anna without her answering the phone or calling me back within an hr. I highly recommend Dr. Adam Anderson at Washington University, St. Louis, Mo. I feel great FINALLY
tinaesims
@tinaesims
@tinaesims
Posts: 36
Joined: Sep 12, 2018
@jkiemen @boomerexpert The problem I am running into is our insurance doesn't cover any really good experts in this field. I suppose I could call the insurance company and let them know what the situation is to see if they would allow other provider. I guess I could go to out of network provider and pay the large copay. Has anyone that is from Wisconsin seen an expert in Wisconsin or has Mayo clinic been the closest?
I have the same problem. I live in western Illinois. The insurance company will let me go to Iowa City but not Mayos.
angiejohnson
@angiejohnson
@angiejohnson
Posts: 22
Joined: Feb 13, 2019
@tdrell @jo ann k….l am from near Milwaukee in Wisconsin…,,,the Aurora system infectious disease dr was about to put me on the big three antibiotics after one culture of MAI taken on bronchoscopy…..l had already gone to NJH workshop on NTM in Denver….coincidently was visiting daughter in Denver when the workshop was being held. So I told the ID doctor from Aurora that l was getting second opinion…..lthink there are a few more in this group from Wisconsin…what did they do????
By the way….on the second day of the 2 week scheduled visit to NJH they told me l DID NOT HAVE the infection but my cough and the positive culture was due to
-we in Wisconsin are considered by ATS as hot spot for NTM….it is in soil water and sometimes air
– due to my GERD l had aspirated the MAI from stomach into lungs hence found on bronchoscopy….but no signs of it /bronchiestasis on CAT scan.
I am followed annually and now every two years to be thorough and l have other stuff they follow…tdrell aka terri
@tdrell I am also from near Milwaukee, Wisconsin. I see a Pulmonologist at Froedert but looking for ID doc. I just had my right middle lobe removed on Apr 8, as it was filled with MAC. Do you have a good Infectious Disease doc?
Jo Ann K
@jkiemen
@jkiemen
Posts: 411
Joined: Jun 23, 2017
@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.
Jo Ann K
@jkiemen
@jkiemen
Posts: 411
Joined: Jun 23, 2017
@tinaesims I have the same problem. I live in western Illinois. The insurance company will let me go to Iowa City but not Mayos.
@tinaesims It is ashamed we are held captive by our insurance when we really need the specialist and experts
Jo Ann K
@jkiemen
@jkiemen
Posts: 411
Joined: Jun 23, 2017
@tdrell @jo ann k….l am from near Milwaukee in Wisconsin…,,,the Aurora system infectious disease dr was about to put me on the big three antibiotics after one culture of MAI taken on bronchoscopy…..l had already gone to NJH workshop on NTM in Denver….coincidently was visiting daughter in Denver when the workshop was being held. So I told the ID doctor from Aurora that l was getting second opinion…..lthink there are a few more in this group from Wisconsin…what did they do????
By the way….on the second day of the 2 week scheduled visit to NJH they told me l DID NOT HAVE the infection but my cough and the positive culture was due to
-we in Wisconsin are considered by ATS as hot spot for NTM….it is in soil water and sometimes air
– due to my GERD l had aspirated the MAI from stomach into lungs hence found on bronchoscopy….but no signs of it /bronchiestasis on CAT scan.
I am followed annually and now every two years to be thorough and l have other stuff they follow…tdrell aka terri
@tdrell I have never been good at getting any sputum up. I think I had one positive sputum of the probably 9 or more I submitted over the last several years . I could not produce any with mucinex and sputum induction. What has been cultured was from bronchoscopy and I had a biopsy in 2015. Did you have any changes on your CT other than bronchiectasis? I guess I have nodules and maybe granuloma. I am having a biopsy next week to see what is going on with the one area. Can you tell me who you see for Pulmonology? Was it Dr Buggy or Brummitt that you saw at Aurora?
Liked by anniepie
@america
In reply to @jkiemen
Hi jkiemen. I also took the big 3! I only did 6 months and my scans also showed some some better and some worse. I even had cavities in there. That’s 4 years ago and then I wasn’t being treated until last year. I also have pseudomonas and I am now being treated for that. I am now at at Mayo Clinic and my doctor is great with Mac so I have hope and I don’t always have the best report but I am looking forward to enjoying life whenever I have good days. Mac is still growing slowly in my lungs and I’ll need to treat soon. Hang in there! This is a long journey and with friends in this group it’s is encouraging. I wish you the best! Hugs to you Rita.