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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, Colleen! Enjoy your well deserved vacation. I will do that. Katherine's posts so will be a ton but I got what I needed today so we're good. Linda
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1 ReactionKatherine, thank you so much for all your support to this group. You have been a valuable source for information and were very committed to the cause. You have my prayers and thoughts for a healthy recovery. We will miss you but understand.
This Philly girl has great faith in Penn...look no further...
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1 ReactionI found this Forum when I became ill this year with a lung infection. I had been diagnosed with MAC in 2001 and was treated with the Big 3. I was susceptible because of radiation for Stage 4 Breast Cancer in 1988 (which I have survived).
Now I have a daily low grade temp and all the symptoms of a Big MAC infection. My doctor has been reluctant to treat me again with the Big 3 because I am now 89 yrs old and the side effects would probably kill me.
I was first diagnosed with bronchiectasis and then COPD. But the lengthy lab tests showed that I do indeed have MAC plus M. lentiflavin, which is new. Consultation with an Infectious Diseases doctor has resulted in a decision to treat me with Cipro to try to eliminate the pesky symptoms and give me a better quality of life.
windwalker writes that using the Big 3 is less common, which is worth looking into.
I have appreciated the comments in this Forum, which encouraged me. As patients, we need to keep asking questions and looking for answers. I live near Palo Alto, CA, and my doctors are at Kaiser Santa Clara. robynmar
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2 ReactionsI'm Jan...... two years ago I was diagnosed in Rochester with bronchiectasis. The sputum tests at that time showed just a trifle of MAC and the pulmonologists there decided to not treat unless it became worse. I have done very well with the antibiotics for flares which happen about every 4 weeks -- since then -- but upon reading here am seeing that most everyone is being treated for MAC. I'm wondering if I should be re-tested or any such thing. I think I'm okay, but was told it was very difficult to treat if we needed to. The sputum tests I have done locally (I'm in Kansas) have been coming back negative but they are not being cultured for MAC. If the intial sputum test is negative -- does that necessarily mean I do not have MAC at the present time or ----- do I need further tests. I haven't been back to Mayo's in two years but have been working with Dr. Moua there if I have a flare and he orders antibiotics according to what the sputum sample shows (MRSA, MSSA, pseudamonas, etc). Can anyone shed any light on this for me?
Hi Robyn! Thank you for sharing your story with the forum. As you have stated that your age being a factor, I would imagine that they would want to have you on cipro on a regular basis as a maintenance therapy. I agree, the BIG THREE might just prove to be too much at age 89. Does anybody else have some input for Robyn?
I was put on cipro for pseudomonas bacteria ----- does it work on MAC too????
Jan, I assume it does because I was put on that (Cipro) and Doxycycline to treat my MAC in 2013. I took each one for 10 days on alternating months for three years. I am an unusual case, so they did not want to treat me with the BIG THREE.
Jan, just curious, how do you know they are not being cultured for MAC? You can request a hard copy of your lab TESTS to see what tests they did. You should probably call Dr. Moua and ask if the MAC test was ever ordered. I have a feeling you were tested for MAC because it usually goes hand in hand with bronchiecstasis (but not always). I just asked the nurse to my doctor about my lab tests the other day and asked for hard copies. She said the labs use the usual petri dish mediums for lung patients and just wait and see what grows. I asked a microbiologist at Va. Tech about it, he said there are specific mediums used in the petri dishes for different bacteriums. Guess what, that still tells us nothing. That is why it is important to go to good I.D. doctors that specialize in our disease uses reputable labs. Please keep us posted. - Terri M.
Hi Jan. That would be a good question for your doctor, because per my previous reply; I cannot be certain that I wasn't put on the Cipro to protect me from pseudomonas. I would be interested to know what you find out. - Terri M.