(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

@jkiemen

@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?

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I have that also and they are scaring me to death

@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.

Liked by heathert, tdrell, noahs

@jkiemen

@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.

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Yes i agree did they tell u they are also checking for cancer i did a broc but they say they scaped area and shows no cancer but cant be for sure without the guided ct i think its all about money snd its very sad

Liked by tdrell, anniepie

@jkiemen

@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.

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Like your last line … (good) we have each other bec only we can understand what the other is going through

Liked by tdrell

@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?

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@jkiemen Hi Jo Ann, I had the same issue with my insurance. I did find a Dr at Mayo that I wanted to see (excluded from my ppo) and asked my primary care physician for a referral. Then called my insurance and told them the only Dr available on their list was not helpful and I needed a second opinion…It took a while but they made an exception. Problem was that they would not pay for tests done at the facility on the spot….I called the Dr office at Mayo and explained the situation when I made my apt. I asked what the Dr would most likely want to see in the way of tests and got my primary to write the script for a catscan. I had already had a bronchoscopy with a diagnosis of MAC. Just brought all of my paperwork with me and had the scan on disc. It was a roundabout way to get to Mayo but sure made me feel better and rest easier. I know that if I run into problems in the future, I will probably have to change my insurance to include the Dr at Mayo as I am most uncomfortable with the pulmonologist on my insurance. I am fortunate that my case is mild. At least my insurance was somewhat flexible. Good luck in finding a Dr to take care of you….If this doesn't work for you, I really believe that it is so important to trust the Dr that has direction over your well being and it might be worthwhile just to bite the bullet and go out of network. Wishing you the best. Kate

Liked by tdrell

@jkiemen

@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.

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Randy Lipchik is my Pulmonologist at Froedert. He is really good, but very busy! I can’t get in for follow up after surgery until 6/21!

@angiejohnson

Randy Lipchik is my Pulmonologist at Froedert. He is really good, but very busy! I can’t get in for follow up after surgery until 6/21!

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@angiejohnson I am glad you mentioned him. I did get a second opinion with him in Dec 2017. I will consider trying to get back in depending on what my biopsy shows. Doing the biopsy on Monday. So it will be several very stressful days after that waiting for the results. That is the worst part. Waiting and hoping.

@angiejohnson

@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?

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@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

@angiejohnson

Randy Lipchik is my Pulmonologist at Froedert. He is really good, but very busy! I can’t get in for follow up after surgery until 6/21!

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@angiejohnson….does Randy Lipchik have a nurse practitioner you could see earlier than June?? My local Froedert pulmonologist here in West Bend has one and she l found is good…and has more openings in schedule and more time with patients….which Froedert doctors are not allowed by the system.
good luck Monday with the biopsy. Tdrell aka terri

@tdrell

@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

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@tdrell It sounds like National Jewish was the way to go.

@jkiemen

@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?

Jump to this post

@jo ann k good luck with biopsy…..and so far no bronchiectasis shows on my CAT scans,…..other stuff which is why l have follow up CAT scans based on Fleischner Society guidelines used by radiologists which really is for checking for Cancer ….over a ten year period no changes in the stuff (nodes and nodules )present….there is inflammation which they feel is from the reflux…l guess because l have never smoked there has been no mention of biopsies and the fact that there has been no enlargements in recent years ….l went to a Dr Claudia Altmann an ID doctor at Grafton Auorora once but went for second opinion at NJH and did not go back to her….again good luck with biopsy
tdrell aka terri

Liked by anniepie

@tdrell

@jo ann k good luck with biopsy…..and so far no bronchiectasis shows on my CAT scans,…..other stuff which is why l have follow up CAT scans based on Fleischner Society guidelines used by radiologists which really is for checking for Cancer ….over a ten year period no changes in the stuff (nodes and nodules )present….there is inflammation which they feel is from the reflux…l guess because l have never smoked there has been no mention of biopsies and the fact that there has been no enlargements in recent years ….l went to a Dr Claudia Altmann an ID doctor at Grafton Auorora once but went for second opinion at NJH and did not go back to her….again good luck with biopsy
tdrell aka terri

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@tdrell Thank-you so much. I am fighting the nodules thing. My MD told me "that's what your type does, it makes nodules". I just want to make sure it is not anything else first then see if the treatment needs to change. I should look into National Jewish at least for a consult and to be established since I expect this will be a lifelong situation I still am struggling to manage in my mind.

@jkiemen

@tdrell Thank-you so much. I am fighting the nodules thing. My MD told me "that's what your type does, it makes nodules". I just want to make sure it is not anything else first then see if the treatment needs to change. I should look into National Jewish at least for a consult and to be established since I expect this will be a lifelong situation I still am struggling to manage in my mind.

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Thats shat i have nodules are they checking it for cancer?

@jkiemen

@tdrell It sounds like National Jewish was the way to go.

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@jo Ann K….yes for me NJH was the way to go….l brought a lot of my previous tests which they accepted without repeats…..they examined my whole self…..wholistic….found out that after 30 years…l do not have asthma….other stuff but not asthma…my medicare and supplement covered everything and continues to ….no bills….it is medicine done as it was years ago….and with the specialization in NTM/ mycobacterium section. Had my insurance said NO….l have found one should fight /protest and try to get them to change….it is worth it…they count on people not protesting….see "Sicko" by Michael Moore…..tdrell aka terri

@mariierod123

Thats shat i have nodules are they checking it for cancer?

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@mariierod123 They will check that too when they do the biopsy. Of course that adds to the stress.

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