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
rits
@rits
@rits
Posts: 70
Joined: May 09, 2019
@rits Hi. Thank you for posting the video with Dr. Pamela McShane; you are so lucky to have her as your physician. I found the video interesting and easy to follow.
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.
Liked by Terri Martin., Volunteer Mentor
Brenda R.
@brigby
@brigby
Posts: 91
Joined: Jun 25, 2018
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.
@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.
tdrell
@tdrell
@tdrell
Posts: 515
Joined: Aug 21, 2016
tdrell
@tdrell
@tdrell
Posts: 515
Joined: Aug 21, 2016
@rits Hi. Thank you for posting the video with Dr. Pamela McShane; you are so lucky to have her as your physician. I found the video interesting and easy to follow.
@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
rits
@rits
@rits
Posts: 70
Joined: May 09, 2019
@rits…when l googled Dr McShane….it read that she is in Marquette Michigan also?? That is …if accurate or up to date a long long commute….what do you know about it??? curious…tdrell
I don't see anything in her profile (uchicagomedicine.org) that mentions any location other than U of Chicago in Hyde Park. Must be another doctor.
Liked by tdrell
rits
@rits
@rits
Posts: 70
Joined: May 09, 2019
@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.
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.
Liked by Terri Martin., Volunteer Mentor, anniepie
Brenda R.
@brigby
@brigby
Posts: 91
Joined: Jun 25, 2018
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.
@rits yes I have had aspergillus show up as well. I’ve never had a bronchoscopy
Liked by Terri Martin., Volunteer Mentor, rits
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3685
Joined: Nov 18, 2016
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.
@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.
Liked by janovr
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3685
Joined: Nov 18, 2016
@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
@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!
Liked by anniepie
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3685
Joined: Nov 18, 2016
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.
@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.
REPLY
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3685
Joined: Nov 18, 2016
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3685
Joined: Nov 18, 2016
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.
@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.
REPLY
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3685
Joined: Nov 18, 2016
@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!!!!!!
@heathert I feel the same way. The members in our group are like family. XXOX
Liked by anniepie
irene5
@irene5
@irene5
Posts: 411
Joined: Oct 03, 2016
@windwalker
@rits Hi. Thank you for posting the video with Dr. Pamela McShane; you are so lucky to have her as your physician. I found the video interesting and easy to follow.
Liked by rits