(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Hi Laura. Penn Medicine has a Mycobacterium Clinic, that sounds like it would be a good place. Can see if there are any references associated with it. Further south is NIH and Johns Hopkins, both are in Maryland, near D.C. I believe. Those both are teaching institutions with very high reputations.

Thank you ---- and has that program worked and kept you from becoming ill with MAC????

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.

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

Thank you ----- I'll ask for more testing the next time (although not sure I want to know). Ha!

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.

So far, yes. I contracted my MAC when I lived in Az. We had a hot tub and a swamp cooler for years. Both are known for harboring Mycobacteriums, especially MAC. I have since moved to S.C. Different water, no hot tub, I do not go into swimming pools, I live near the ocean and the sandy soil tends to drain off rainwater quickly. There is less dank dampness to harbor organisms. (just my opinion) I was, however, diagnosed with pseudomonas last spring after having been on the cipro and doxycycline for three years. Am now being treated for the pseudomonas with Tobramycin and cipro. I do do these on alternating months. You cannot judge what I take to be suitable for you, because we are all different. For some of us; the bugs we have may be resistant to certain antibiotics. My lung function is so low that I am on the brink of needing a lung transplant. That is why I was not put on the BIG THREE antibiotics. My doctors feel that I do not have time on my side for a long duration of treatment.

My point (I got off track) is that many re-infections happen because we are re-catching the MAC from the same source. Biggest culprit tends to be our very own hot water tanks and shower heads. It is recommended that we turn up the hot water tank to 130 degrees to kill the MAC inside our homes. I moved away from Az where my original source was. Am hoping my new local will prove safer. Terri M.

Terri -- I didn't eat out either -- missed grandson's graduation -- we host Christmas dinner out for employees -- missed that, etc., etc. Codeine cough syrup didn't help at all but strangely, one hydrocodone (which has some codeine) does help. Takes about an hour for it to kick in -- and one never caused me any trouble feeling strange or anything like that but it surely did ease that cough down for about 4 hours. I didn't know about it for years but once I learned...... I used it before I'd go to hairdresser -- or bedtime. It helped me -- might not work for anyone else but -- certainly worth a try. My last sputum test says "Final Reports" Usual upper respiratory flora...... then beneath that under gram stain, it says few epithelial cells, few white blood cells, mixed bacterial flora............ nothing more. My primary care doctor says this is negative. Goodness...... I don't know.

Jan, did that negative report get issued after 6-8 weeks? It takes six-eight weeks for MAC to grow.

Jan, if you are not certain that your local docs and labs are not up to snuff; you may want to consider trekking to Mayo once a year for your check-ups. You could make a vacation out of it. At least all tests are done in one day and you know the results will be complete and accurate.