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@auntnanny

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.

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Replies to "To the best of my recollection, when I was at Mayo's 2 years ago I gave..."

Thank you for explaining NTM -- I didn't know that either. I have no trouble coughing up when I'm having a flare -- which seems to be about once a month. So, I'm able to get a lot for the sputum testing.

The way it was explained to me by several doctors is that one should not wait to be treated regardless of the degree of symptoms because MAC/MAI will continue to do damage, so the sooner the better in terms of treatment. My doctor at Vanderbilt says that in time more and more physicians will say treatment is necessary for all who have been diagnosed.

 

 

I too had sputum inductions and no results. My ID MD did test on IGG, IGM and IGE antibodies. My IGG and Subclass I was slightly low. But so far no treatment

for either. I am starting on Zantac for Reflux

 

JO Ann K

Irene, I believe that to be very true. I have a feeling I had MAC awhile before it was properly diagnosed. I feel like that is why my lung function is down to 44% now. I think much of the lung tissue got severely scarred and damaged before it was caught. It is very confusing because many doctors, including my beloved one at Mayo, do not believe in treating MAC right off the bat. (unless it is severe) I would like to go to the next NTM Conference next year and see if there is any new info out there.

Sounds like a plan!

Perhaps I'm an outlier, but I'm guessing not...my MAC moves around, heals in one area, then moves to another, which my Pulmo who specializes in NTM's determined to be not needing treatment...in essence I'm idling in neutral. I believe amount and type of treatment must be on a case-by-case basis as all folks are different, with varying systems and responses. Given that I also have RA which comes with a compromised immune system, I feel fortunate to have found a doc who really knows his stuff!

Hi @boomerexpert I have heard of that before, so wierd that they move around! Have you had negitive sputums for MAC?

Maybe they are like hermit crabs - always moving into a new and bigger house as they grow!!

@boomerexpert Are you sure it is the same MAC infection that is moving around and not re-infections that occur in different spots at different times?

Hello Gina. Have you tested since Dec 2016? If not, you may want to think about it. It is a good idea to stay on top of that; just to be sure it is not colonizing.