(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.

@gaelawree

Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.

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@gaelawree are you wearing a mask when you are working with dust, horses etc.  It would sure be a good prevention.  You need to do everything to prevent bacteria when you are  exposing yourself to those bacteria . Are  you taking Probiotics.  It might

be helpfulin your case. Do you have bronchiectasis? Nick

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@boomerexpert

@hallann we all understand that scary dx! Read through postings here…you'll find many folks, like me, who are asymptomatic and don't as yet require treatment…you'll find others who found great docs and treatments far less problematic than simply taking the "big 3"…first step is to find the finest doc in your area for MAC…just any pulmo or infectious disease doc won't do. If near a Mayo clinic, go there. Are you experiencing symptoms?

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@windwalker lol sometimes it sounds like it . You are certainly right that it is not every Mayo clinic that treats the same way.   It seem to have more than one Mayo Clinic in the state.  I am learning lol .  Your health system is so different in the state

then Canada. Where I live we have good doctors and not to good like everywhere but I must admit we have good and fast service. Because we live in a small community the word is out fast when we have a not to good doctor lol.   It is not the same in big cities

like Quebec, Ontario etc but in New Brunswick I have great service and competent doctor in my case. I was very surprise when I met the infection disease doctor how much knowledge he had and how prevention his treatment was and how available he was.  Nick

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@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

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@1478 What did you mean by "we have to trick the bacteria to kill it"? By using a secret agent bacteria? LOL. Ok, I am just being silly now.

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@gaelawree

Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.

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@nick52 yes I am wearing masks in dusty areas. I don’t have bronchiectasis, I do take a very probiotic.

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@gaelawree

Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.

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@gaelawree Good! I am glad that you have a good doctor. I hope he can come up with a good treatment plan for you. Like Nick said, consider wearing a mask when working around the horses and especially when gardening. They sell good masks that fit snug around your face and have a respirator breathing thingy in the front. They block 99% of particulate matter. They sell them at the paint store, a box of two run about 6 or 8 dollars. I think Scotch Brand may make them. They are called N95 mask. Potting soil has over a billion mac in one teaspoon, so be very careful about the dust that wafts up out of the bag. Chances are, you caught yours in your daily routine, so you don't want to increase your bacterial load. If you have the time, there are years of backlog to read here. There is a discussion board with a list of topics at the beginning of the sign-on for this group. Please let me know if you have trouble finding it.

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@boomerexpert

@hallann we all understand that scary dx! Read through postings here…you'll find many folks, like me, who are asymptomatic and don't as yet require treatment…you'll find others who found great docs and treatments far less problematic than simply taking the "big 3"…first step is to find the finest doc in your area for MAC…just any pulmo or infectious disease doc won't do. If near a Mayo clinic, go there. Are you experiencing symptoms?

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@nick52, I am glad you are having good luck with healthcare in Canada. I have dealt with two other Canadians who are having a terrible time with it. They have to wait 6 months for an appointment and it is an urgent matter. One said the doctors are clueless about mac where she lives. One also said she couldn't get approval for some tests. One told me to be careful what we wish for. She said socialized medicine isn't all it's cracked up to be. I think you are very lucky that your doctor knows his stuff.

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@gaelawree

Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.

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Gaelawree….have you had Cat scan of chest??? I believe that is the way it is determined if you have bronchiectasis or not.tdrell

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@gaelawree

Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.

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Yes I wear the N95 mask. If I have to stop gardening to be more healthy I will, giving up my horses, that’s different, I don’t think I can do that. I’ve had one for 18 years. But I can do my art work instead of gardening.

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@gaelawree

Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.

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Yes I did have a CTscan on my lungs. I was not told of bronchietasis.

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@cowgirlmt

Has anyone been to National Jewish Health in Denver Colorado?? I did a phone consult with them this morning; pending an appointment. I am just trying to figure out if I will need to take a week off of work to fly up there or if it will just be an appointment 1 day.

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@cowgirlmt…I went to NJH in jan 2017 ….then again for. Follow up in January 2018.
Cilia gave a perfect summary. If you have a time limit….ask them/tell them about it when they call to schedule. I brought with as well as had clinics send reports and CDs of tests I had done here in Wisconsin .that might save time. Ask some more questions that you have of the NJH patients. Tdrell

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