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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Thanks for your reply. It's great to feel I can attack some of the offending sources! Happy Thanksgiving. Best, Kathryn
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1 ReactionKateThanks for asking. I'm on the big 3 for one MAC cavity in my upper right lobe (finally diagnosed in July 2016 after pneumonia in Dec 2016 and a 'abcess' they watched till a bronchoscopy lovage showed MAC. Going back to Mayo in Jan. The cavity wall is smaller, so they might do surgery. I tolerate the meds but they still nauseate me at times and I'm tired. Nothing showed on my last culture. I do have a question. Did you say you had geographic tongue? Was it from our meds?I'm going next week to see my PC doc, but I have I red streak on my tongue where the papillae is gone. I think it might be that, but just wondering if you have it. Sounds like not serious.Just another part of this! Have a great tripKay S
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1 ReactionGood idea and Happy Thanksgiving to you all. My cough is improving and less phlegm so that's hopeful. Still a little nausea when eating so appetite still off. But I'm thankful we live in America and are blessed with such good medical care!
David
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1 ReactionHi Katherine, Jan in GA here. I have been reading the posts, but have not added anything in quite a while. As you remember I was DX in May,"15.... after having pneumonia 3 times in 12 months.....went on the Big 3 twice. Ended up in the hospital twice. Lost 30 pounds. Decided not to take the meds as for me the cure was worse than the disease. Found a new MAC doctor at Emory/Atlanta. My main issue is fatigue. Some days are better than others, but I am still able to do anything I want....just takes me longer. I am working with a nutritionist, lung rehab and Dr. Colin Swenson. He recommended the Spiriva inhaler and it has been a HUGE help. My o2 stays in the 95 + range. I am not on oxygen. My last CT Scan he was delighted as my nodules had actually gotten smaller. YAY.
We have a doctor (surgeon) in our support group who has MAC. He recently went to the symposium in NJH in Sept. He spoke at our last meeting and gave such sound and comforting advise. Live your life to the fullest, don't get so hung up on the disease it consumes your life and enjoy what life you have. He flies all over the country, wears no mask, and stated a nutritionist who spoke gave the most insightful information.
I was overjoyed to hear his "down to earth, sensible advice" as that is one reason I stayed off the internet. I was driving myself nuts trying to do all the things suggested. I just read, research and do what I think my body can tolerate.
Thank you Katherine for ALL your effort to keep us informed.
May God richly bless all of you and hold you in His mighty hand daily. May we all be thankful for the lives we have and enjoy each day, good or weary to the greatest of our potential.
Jan in GA.
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4 ReactionsGlad to hear your ok katherine and happy thanksgiving to all. I will let you know as soon as I get the result of my culture test. I hope that the result is negative since I no longer want to take antibiotics since Im afraid of the side effects. As of now I still have excessive mucus usually early morning.Whenever I felt that I have excessive phleghm I go to the bathroom and expel the phlegm and I never had difficulty doing this it comes out easily and after doing this usually I dont cough the whole day. Im soo happy to find this forum I am a filipina and looks like no one here knows NTM. I did through researh about the disease so I can explain it to my friends and relatives. Im glad despite this illness im able to function normally so im still gratefull. MY HUGS AND KISSES TO ALL
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2 Reactionsphilomena...congrats on the good news! tdrell
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1 ReactionHello katherine, I'm so happy for your news. Did you do CT scan or the sputum culture? The Drs. the I saw never did sputum culture on me. When I see my Pul. Dr. end of this month I will ask him why he never mention about sputum culture. I still having hard time sleeping and I tried the unison and they gave wired feeling. Now I'm not taking anything for sleep. I'm so tired b/c of not sleeping. Thanks for all of you for your input. Happy Thanksgiving to all of you. Cila
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1 Reactiondear Katemn....just re read the lovely note you wrote above....i digest better when reading on old fashion PC vs my Ipad or iphone..
I totally agree with the need to have my own set of records on everything done to my body...and l have it...l admit the piles need better organizing but l have it...and do have the recent NTM stuff in separate colored folder...and separate envelope for all the CDS of the tests done...I brought them with when l went to the September workshop in Denver and made sure by email and phone that the Medical assistant ( at National Jewish ) whose job is to collect all of that and give to the Mycobacterium Section crew had everything. There is even a template they use to list all that is needed (which impressed me)
As I continue to have cultures here done on sputum ,I will need to get those records...though ironically the first one which grew Mycobacterium (because the ID dr wrote to order specific to "Mycobacterium vs just asking for a culture) was sent to National Jewish for sensitivity. I am not sure if that is the labs usual routine or because l had told the ID dr l would be going there!
Per your suggestion l have put on my list for my appt in January at National Jewish the question of do l need to have a sleep study.
On the list is also what about the tonsils that appeared on the bronchosopy after being removed 67 years ago...what should l do about them? figure that with 7 days of seeing Dr Heuitt or the Nurse practioner assigned to her...l will get a chance to get answers.
tdrell
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1 Reactionnnassiri....not meaning to be a troublemaker...but l have two questions ....the sputum culture Order from the doctor has to be labeled...l believe....to check for Mycobacterium. My regular Dr months ago ordered "sputum culture" that showed "inflammatory cells" nothing re the MAC that showed up on a washing from my bronchoscopy. last month the infectious disease DR ordered a sputum culure specific for Mycobacterium (NTM) and it grew it.
Also are they doing chest CAT scans to monitor her?tdrell
imeehaight...you have been on a log journey for sure! some questions that come to my mind after reading your info....what type of work do you do?? Have you had allergy testing?? Pulmonary function testing...chest CAT scan....tested for GERD? By EGD and esophagram?? Has asthma been ruled out? do you smoke?
tdrell
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