(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.

@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 Oh my gosh girl! You have no idea how glad I am that you will be going to NJH Good help is on the way! @tdrell (Terri) has been there several times for treatment. I am sure there are others as well who will hopefully jump in. You will need to make the appt. first and ask about what tests they want to run on you. The Mayo ran all of mine in one day and then I met with the pulmonologist at the end of the day. We went over test results and a treatment plan. Please keep me informed about when you are going. You of one those on my 'Most worried for List'. You may not hear from me every day, but I worry about you every day. That goes for others that I know of that are very ill and feeling especially terrible. For now, cyber hugs for you.

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@boomerexpert

@suzie2017 recommend you Google "indications of end stage COPD"…also get a second opinion from a doc willing to go over the results with you two.

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@irene5 Great advice. I take my husband to every appt. Although, sometimes we argue over what the dr said. Sometimes he hears things differently.

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@suzie2017 Suzie, MAC is serious when one has a full blown infection from it. If it is a heavy bacterial load it can do destruction to lung tissue. That is permanent damage. I have lost a little over 60% of my lung function and I know that my right middle lobe is pretty much dead. If your husband's doctors don't take this seripusly, then you may need new doctors.

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@sophie1019 Sophie, if you are talking to me, I took 500 mg of cipro 2x day for ten days and on alternate months was on 500 mg doxycycline 2x day for 10 days.

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@jkiemen Hi. It's funny, I do not think of mac every day concerning my own health because I don't believe I am infected any longer. I feel great. I go for my next sputem test in a few weeks. Being the Mentor for this group, I do think about it daily. Only now, I worry about others that are battling it. I do stay concious as a second nature to try to avoid reinfection. I pray that your day comes soon that it doesn't pervade your thoughts so much. Hugs! Terri

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@suzie2017

My husband had his bronchoscope yesterday. The report shows terms that I am not familiar with. The doctor came out to talk to me but rattled on so fast and I was unable to compare what he said to the report. Here are some of the phrases in the report. Left lower lobe collapsed lung and pushing against the heart, abnormal left main stem bronchus (report goes on to say the same thing about right, left upper, left lower, right upper right middle and right lower lobes) including the subsequent. Washings were obtained in the entire tracheobronchial tree and return was cloudy. Doctor used the words “milky” and said it could represent a new infection. Area of chronically inflamed mucosa was found throughout the tracheobronchial tree. Mucous was copious, green, mucopurulent and thick, underlying mucosa is friable, extrinsic compression was found in the left lower lobe segment. No attempt to do TBBrushing of LLL segment due to friable bronchial mucosa (must mean blood). Does all of this point to end of stage COPD?

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I called the Pulmomologist on Thurs to let him know that Jess still had blood in his phlem. He said if it amounts to more than a tablespoon to get him to ER or if he begins to feel poorly. He said if this occurs, he would admit him and begin IV’s. So far the blood amount is a little less than a tablespoon. Actually my husband seems to feel pretty well except for fatigue. He eats very well but continues to lose weight. Yesterday we visited the heart doctor and he weighed in at 118. His normal weight is 150. His temp has been low. Yesterday morning it was 95.8 and last evening it was 97.7. We see ID doctor this Thurs. Thank you so much for responding to me.

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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

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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My infectious disease doctor and my lung specialist had advised me to refrain from taking antibiotics unless my condition worsen. When I was initially diagnosed, I coughed a lot and even coughed up blood. That only happened twice. The coughing continued for some time. Presently, it has eased up considerably. However, it never forgets to remind me that it's still there. Recently it's sleep time that I worry about it showing up. Even if I would take the two antibiotics that work with my MAC, they will only work 50% of the time.

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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When I responded to you Terri, I neglected to mention that my husband has been on Prednosone pack 10MG and also Cefuroime Axetil 500 MG ever since his Bronchoscopy on 5/15/18.

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I misspelled the antibiotic. It is Cefuroxime Axetil.

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