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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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I am saying and feeling more gratitudes especially this week after being able to work for a month now and so much more. It is amazing the peace I am feeling knowing that I don't have to work myself so hard. I have always been very driven, measuring my day by how much I have accomplished. I still don't know whether or not I have MAC - but the symptoms and cscans seem to point there on top of the bronchiectasis. My friends are now more understanding that I don't talk much on the phone and don't push myself to be everywhere all the time. Have a great weekend. (I am going to start by watching a French cooking movie!) And friends are going to help me do lawn work the next weekend. God Bless, right?
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3 ReactionsApportee...you asked if you cough alot with MAC....for 2 years...before i was diagnosed from the washings from a bronchoscope which grew the cursed MAC.....every evening from 5 pm for 2 to 5 hours I would cough ,wheeze and bring up lots of thick..white or clear.mucus....which tested in a routine culture...negative. I heard Dr Daley an NTM specialist at National Jewish...comment that MAC mucus is Clear to white.terrid
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1 ReactionBe not afraid of a bronch! I had one...put you under so not conscious...you wake up and it's over! The worst part was sleeping of the anesthesia...not bad!
Thank you Katherine, I was feeling better I thought but today I felt the shortness of breath and the heavy presure on my chest. I think is the MAC disease but my Dr. thinks is my acid reflux. I do a little bit of house work and I'm catching my breath. Sometimes I wonder if the meds I'm taking are working. Anyone has this problem and taking more than 3 x a week? The Unison and the Magnesium are alright with the meds? I will try to find another meds to take for cholesterol. Cila.
I've had hot flashes during the day and at night ever since I started menopause. They are less frequent now, at night I usually have at least one hot spell. I just kick the covers off until I cool off. My pj aren't wet from sweat. My Dr always asks me if I have night sweats. I've told him what happens to me. He says mine aren't considered night sweats. He says with a night sweat you wake up so wet from sweat that you have to get up and change pjs.
Lisa @tutti
I had the night sweats before I was diagnosed with MAC. This was one of my first symptoms. I had hot flashes when I was taken off estrogen, so much that I asked to put back on. They were miserable, but was different from night sweats. When I had those, I would wake up so wet I would have to change clothes and at times change bed linens. These got more infrequent as treatment for MAC continued.
Cila, Unison and Magnesium have always been on my med list as "over the counter" and Dr. Aksamit has never mentioned anything so I think all is well .. it has worked for me .. that is all I can say. You might also talk to your doctor about trying a different Gerds med? I know I had to try several before I found the one that worked well for me. Hugs to you! Katherine
Apportee (do you have a first name?) .. I might add to Terri D. that in addition to the clear/white mucus .. I also have light to dark yellow spots in the middle of the mucus at various times. Dr. Aksamit doesn't seem to be too alarmed .. just asks me the size and darkness of the yellow spots. I only add this so people won't be too alarmed if they see yellow in their sputum. It SHOULD be reported to your doctor .. BUT do not get too worried. it has happened to me all along for years .. and I am still hopping along! Hugs to all! Katherine
Thanks Katherine, and also thanks to Jill, Nan, and TerriD for sharing your experiences with me. I appreciate it. I had my appointment with the respiratory specialist this morning and was surprised that he recommended no bronchoscopy and no treatment for MAC, although that is what he suspects I have, because I am fairly healthy and don't really have symptoms that are affecting my functioning. Even though I have bronchiectasis, he said that any further damage to my lungs as the result of MAC would be at the rate a glacier grows, i.e. extremely extremely slow, and that the treatment is worse than anything he suspects I would experience with the MAC and it is sometimes not successful. Has anyone else had this response from a specialist?
Fran, I hardly know what to say. I have been pondering this since last night. Even went through all your past posts. Your situation is complex living in Canada where I am not very familiar with your medical options but I understand they are more limited than in the USA.
Bull that the treatment is worse than anything he suspects you would experience with the MAC and "sometimes not successful" .. what a ninny! .. you know from reading our Forum that we all are surviving and MOST of us THRIVING .. phooey to him! Sorry .. but sound like dollar savings to me .. just my opinion .. sorry.
This is just ME .. but even if I felt just GREAT .. but with what you have told us .. I don't think I could sleep well at night until/unless I had gotten a second opinion from a Pulmonologist who specialized in MAC .. and/or had numerous MAC patients in the past 12 months. Who had done a bronchoscopy for me .. had the results cultured .. done a CT scan AND then gathered all the resulting information .. AND THEN had told me I did not need MAC treatment. I would THEN do a little dance of joy and go on with my life again feeling just great! But this is just me with my doing my "due diligence" and being a toughie!
I do not know if your financial situation allows you to travel to the USA for obtaining a second opinion? If not .. I just did the good old google! Google it YOURSELF .. and educate yourself to your Canadian options!! You may have to be your OWN best advocate .. be assertive .. in a nice positive way .. remember .. you get more with honey than vinegar .. BUT also remember "The squeaky wheel gets the oil"!! NOBODY cares about your body more than you do .. AND you are given but one body in this lifetime .. if YOU don't take care of it .. WHO will?!
I just googled: CANADIAN MEDICAL RIGHTS TO A SECOND OPINION. I came up with .. that you might research:
https://www.cmpa-acpm.ca/-/when-a-patient-seeks-a-second-opinionhttp://healthydebate.ca/personal-health-navigator/youre-doctor-wont-send-second-opinion
and then research you need to google the above statement some more .. AND then get moving with your due diligence .. IF that is what works for you .. AND that is what you want to do. It is YOUR life and your journey .. only you can decide the direction you want to take. We will all be there for you whatever you decide to do. Hugs to you! Katherine
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