1. < MAC & Bronchiectasis

(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.

rits | @rits | Nov 2, 2019
In reply to @brigby "@rits Hello, I had Mucor show up in a sputum sample too, but doc thinks it..." + (show)
@brigby

@rits Hello, I had Mucor show up in a sputum sample too, but doc thinks it was just a contaminant (since I’m not deathly ill). Let’s stay in touch.

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Hi Brenda, it showed up last June and I"m not deathly ill either! Dr McShane told me that it was her job to worry, not mine and she wasn't worried about it. However, she did have me undergo a bronchoscopy with biopsies of a suspicious area but they didn't find it. They did find asperigullis (sp) but it didn't grow. A fungus shows up in my samples but never mucor again. She told me that it is very common to have some fungus.

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1 reply
Brenda R. | @brigby | Nov 2, 2019
In reply to @rits "Hi Brenda, it showed up last June and I"m not deathly ill either! Dr McShane told..." + (show)
@rits

Hi Brenda, it showed up last June and I"m not deathly ill either! Dr McShane told me that it was her job to worry, not mine and she wasn't worried about it. However, she did have me undergo a bronchoscopy with biopsies of a suspicious area but they didn't find it. They did find asperigullis (sp) but it didn't grow. A fungus shows up in my samples but never mucor again. She told me that it is very common to have some fungus.

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@rits yes I have had aspergillus show up as well. I’ve never had a bronchoscopy

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 3, 2019
In reply to @sounder27 "Heathert. I was diagnosed with bronchiectasis and Mac about 5 years ago after a cat scan..." + (show)
@sounder27

Heathert. I was diagnosed with bronchiectasis and Mac about 5 years ago after a cat scan for a possibly perforated esophagus. I had been coughing and short of breath for a year or so, which was attributed to post nasal drip and my afib. As far as the allergies go, I’ve had them for many years ...well before I was diagnosed with Mac. Especially have trouble in large gatherings when people wear colognes. I also have sensitivities to foods and many antibiotics. I use fragrance free everything...soaps, detergents, and all natural clothing and bedding. Unfortunately, my condo has carpeting in the bedrooms and it is a costly proposition to put in hardwood floors. Won’t be doing that for awhile.

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@sounder27 Have you ever been put on Singulair for the allergies? It was a life changer for me. When my Mac was active; I was super sensitive to all smells too.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 3, 2019
In reply to @tdrell "@windwalker ….was not sure how to list the link to the 2019 NJH workshop videos....so that..." + (show)
@tdrell

@windwalker ….was not sure how to list the link to the 2019 NJH workshop videos....so that members would see....if you are able to...would appreciate ...my tech skills are atrocious. take care...be well...thanks....terri @tdrell

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@tdrell Hi Terri. The link you posted for the videos worked just fine. I enjoyed watching them and I am sure others found them useful. After I watched the 'Nutrition' one, I sat down and ate two bowls of cereal, and then two bowls of chili at lunch. Ah, the power of suggestion. I hope you are doing well. Hugs!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 3, 2019
In reply to @rits "I cannot take credit for posting the videos which were shared by tdrell. I was referred..." + (show)
@rits

I cannot take credit for posting the videos which were shared by tdrell. I was referred to Dr McShane by another outstanding pulmonologist at the U of Chicago when my sputum sample came back positive for MAC. Yes, I am very lucky to have her for my physician. In addition to her doctoring, she is so optimistic that I told her that I was going to record her if she called again. She had called to reassure me with respect to a scary fungus (mucor) which showed up in a sputum sample. We have a great rapport and I think people can see from her video that appointments with her are not only productive but fun.

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@rits I actually enjoyed my appointments with Dr. Leventhal at Mayo Clinic, but unfortunately for me; he retired this past August. The Dr. that has replaced him seems to be very invested in this mac disease. I have not met her yet, but I did read her bio and some of her published articles she has written about her observations in treating NTM. I will meet her next June.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 3, 2019
In reply to @irene5 "Thank you!!" + (show)
@irene5

Thank you!!

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@irene5 Hello Irene! I thought of you as I watched that 'Nutrition' video. I ate two bowls of cereal and two bowls of chili!!! I ate enough for both of us.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 3, 2019
In reply to @ginak "Thankfully, I don’t have very bad coughing unless it’s allergy season, (May and September for me),..." + (show)
@ginak

Thankfully, I don’t have very bad coughing unless it’s allergy season, (May and September for me), with awful post nasal drip. Then, infrequently, I cough so bad it makes me gag! I started wearing bladder leakage pads also 2 years ago for a couple of months. But, then found out it wasn’t my bladder after all. At my yearly GYN appointment when I told my Dr about it, he didn’t think it was urine so he did a biopsy and surprise, I had endometrial cancer. Thank God it was very early stage! I had surgery and radiation and am now 2 years cancer free. AND I no longer wear a bladder pad. So I guess my cough and throat clearing isn’t that bad after all, but, it’s still annoying sometimes. I’m happy, and sad, there are others that understand this crazy journey. 🙏🏻 for all.

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@ginak Hi Gina. I am soooooo grateful that your endometrial cancer was caught early. I am glad that you mentioned your bladder leakage as a symptom so that we can all be smarter about paying attention to changes in our bodies.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 3, 2019
In reply to @heathert "@windwalker Thanks so much Terri I would miss all of you also if I left, so..." + (show)
@heathert

@windwalker Thanks so much Terri I would miss all of you also if I left, so I will not be leaving.. You and I definitely go way back ,along with others on this site, you are all like family to me and have helped me no end along the way. Being able to help others with MAC-MAI is also wonderful, I know how I felt when I was diagnosed, so scary. Right back at cha with the love and appreciation!!!!!!

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@heathert I feel the same way. The members in our group are like family. XXOX

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irene5 Irene Estes | @irene5 | Nov 3, 2019
In reply to @windwalker "@irene5 Hello Irene! I thought of you as I watched that 'Nutrition' video. I ate two..." + (show)
@windwalker

@irene5 Hello Irene! I thought of you as I watched that 'Nutrition' video. I ate two bowls of cereal and two bowls of chili!!! I ate enough for both of us.

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You’re funny! Thank you for that. 🤗

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jml060448 | @jml060448 | Nov 3, 2019
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

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Kathy, I just started the treatment about 1 1/2 months ago. My experience is very much like Kate's at this point. Very tolerable up until now. I'm hoping it continues along this line. Like you the cough is sometimes almost unbearable and can be so embarrassing. I'm hoping this treatment works and helps with my overall health and breathing. I have had copd for well over 20 years but was getting along pretty well up until a year ago when I had lung volume reduction surgery and the MAC was discovered. I have tried to tell the doctors for years that I felt there was something else going on other than just the copd going on. I think the MAC may be what it was I just didn't know I had it or ever heard of it.

Good luck, give it a try if it becomes a problem you can always stop the treatment.

John

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