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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
To the best of my recollection, when I was at Mayo's 2 years ago I gave sputum samples on three different days. It seems to me they knew immediately that there was a showing of MAC but decided to not treat it because it was not much. Now, since I've been home and using a more local lab, my primary care physician has usually requested the analysis and I take the sample to the lab. Have done this about 8 times over the last two years....... it has shown MRSA, MSSA, pseudomonas, etc., and there would be a listing of antibiotics recommended for whatever was there. I have hard copies of all. I always ask for that. But, the last four times the report has said negative and therefore there has been no recommended antibiotic. Dr. Moua (Mayo's) has just told me to use clindamycin as that has always worked well. When I've inquired of the lab about MAC they tell me there has been nothing to culture and I've never had a culture report from the local lab. I'm doing pretty well...... but I've read it takes 6-8 weeks to culture for Mac, and therefore, just wonder if they are getting it right. I have questioned why I seem to have a flare of coughing and no bacteria (for four times) ....... then I take antibiotics for a couple of weeks and am clear for about a month. It's just not all understandable to me. but certainly I'm not ill like I was when I got to Mayo's two years ago after five years of horrid coughing and green phlegm and 7 local doctors saying I had asthma (which I knew was not right). Mayo's is 10 hours from here so I'll go back if I become ill again but I've done okay with whatever program I'm on presently. Could change tomorrow....... but that is my story as of now. The coughing used to be so bad I sat up in bed for years to try to sleep at all. I was never able to go to any public function because I would steal the show. So...... one thing I found relieved that cough just for a few hours at night was a hydrocodone. I came upon that by accident. It was given to me for an injury and I found that it suppressed the cough for about 4 hours -- enough that I could get a little bit of sleep. Just passing this on in case there is someone who has not been able to get any rest at all. Worth a try. I didn't take it in the daytime because I certainly didn't want to become addicted but at night, it was the only relief I ever found ----- until I got to Mayo's.
Replies to "To the best of my recollection, when I was at Mayo's 2 years ago I gave..."
Ha ha ha Jan! My cough used to steal the the show too. Not funny though, we missed out on some things. I was so bad, I couldn't even eat out at a restaurant. All I can say is, do keep on top of being tested periodically for the MAC because it can work in silence without any symptoms.
Do not understand about the culture taking 6 wks. Dr Anderson at Washington University St. Louis, Mo is running a 3 day sputum culture on me every month. He says it takes 20 days for the MAI to grow. So far, after 7 mo's all the cultures are positive. He is now running a test to see if I'm resistant to the 3 drugs. Is Dr. Anderson not running the proper tests on me??? Before the 9,300 mg of antibiotics a wk I could hardly go out in public my cough was so bad, with the meds the cough is much better. I also use a Smart Vest 10 min 2 times a day to help loosen the mucus so I can cough it up. I feel better because the cough is better, have much more energy but hot flashes are almost unbearable, very fatigued after a few hrs of being active but can do yoga again now. My joints ache but I'm afraid to take anything for pain because I figure that my liver and kidneys are getting enough work out with 9,300 mg of antibiotics a wk. I go back to Dr. Anderson on Sept 1st so need to know if he is running the proper sputum culture tests as so far they are just showing positive for MAI.
Ladies..... please don't smile when I ask but what is MAI??????? I may be missing out on something. Jan
There is a dilemma in suppressing coughs. This article might help you understand why:
https://academic.oup.com/cid/article/30/3/572/601429/Lady-Windermere-Syndrome-Middle-Lobe
It seems to suggest that suppressing coughing voluntarily could lead to MAC. This is also what my pulmonary doctor has told me when I told him my effort in trying to suppress the annoying coughs for many years.
@auntnanny it's a subset of MAC; stands for Mycobacterium avium-intracellulare whereas MAC is Mycobacterium avium complex. And no surprise that you never heard of it...lots haven't!
Thank you and no, I've never heard of it. I have a lot to learn
@auntnanny
Hi Jan, MAI is another type of mycobacterium, it is Mycobacterium Avium Intercellular. That was my diagnosis in December 2016 after removal of a lung nodule. I had no symptoms except for the constant throat clearing and cough. Sometimes worse than others but usually not bad. I haven't been prescribed any antibiotics yet.
Gina K
Thank you, Gina...... I learn something new every day. Do you know why they haven't prescribed anything yet? Due to surgery? Just wondering.
@auntnanny
Hi Jan, The doctor I'm going to at NYU, David Kamelhar, (got him from the American Lung Assoc, NTM* website), said since I have no symptoms and barely cough up anything at all, he would advise waiting on antibiotics. He prescribed using an Aerobika two or more times a day to try to cough up mucus from the bronchiectasis, but even with that I barely cough up anything. I just recently had a sputum induction, (again barely coughed up anything during that), but I don't see him until Oct 9 for results since they said at least 6-8 weeks to see if anything grows.
I've read on here quite a few people don't get treated immediately, depends on symptoms I guess. Don't feel concerned about asking any questions on here, there's always someone who has some information. I don't feel very knowledgeable about all this either since I've only started this journey a few months ago. I just try to find out as much as I can, watch whatever videos are posted from conferences, and read what everybody else has learned along the way. Some of it applies to me, some of it doesn't, but as Katherine and many others have said, "knowledge is power". So I try to learn as much as I can from trusted sources.
Hope that explains a little.
Gina
*NTM = Non Tuberculosis Mycobacterium
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Jan, What I learned is that if you get your culture back within a couple of days, they didn't check for MAC. You need a culture that requests a gram stain and an AFB culture and smear. Those take about 6 weeks but should show if you have any issues with MAC, etc. If you get your tests back negative for MAC, it just means that it's not colonizing at the moment. It will always be there. I always request copies of my labs and have a notebook with all my records in it.
Good information about the cough. I tend to have a dry cough that has been more annoying lately but I also had an underlying infection starting so it doesn't seem quite so bad since I've been taking Amoxicillin for it. Linda