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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)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..."
Great timing, Terri! I had planned on posting today to get some feedback on my ID doctor apt yesterday. So to catch you all up, I stopped taking the Big 3 about a month ago after I got in a small car accident and realized that I was really confused - a side effect of Rifampin. My last 3 sputum cultures were clear after 7 months of being on the meds. My doc wanted me to stay on them until next March but I told him that I needed to be off them for now (I sell residential real estate so do a lot of driving). I had a chest CT which, when compared to the one done last Nov showed a lot of positive results - comments like slight improved, stable and not significantly changed were encouraging. So, while there is a whole lot there, it seems to be under control at the moment. I asked my doc what he would suggest going forward and he said to just wait until I begin to feel bad and then we would treat those symptoms. I asked him about the alternating Cipro and Doxy, bringing your post from July in and he said he never heard of doing that. I said, well, now that I've just told you, you have heard of it and now what do you think? He wasn't a fan. He doesn't believe in suppression but treating the symptoms when something comes up. He said to come back in Nov when we would get another sputum culture. I'm not really a fan of his approach. I like being more proactive than reactive. Plus, they don't do PFT's there. When I asked about that the nurse said, well don't you have a pulmonologist? Well, no I don't. I have an ID doc and a CF doc. My CF doc does PFT's but I only see him once every 6 months. So, I'm thinking now of exploring some of the Mayo docs to see if I can get one doc that can handle my complex lung issues. Would like to know what you all think? Linda
I brought it up to my ID MD too and he did not like that either
Jo Ann Kiemen
@lindam272 Linda, It is funny that you want to try the Mayo docs to see what they'd say, and I want to see a doc at NJH to see what they'd say. You may be in pretty good shape all things considered. Don't forget, my doc thinks I am headed for a lung transplant soon, like in a yr or two. I believe I might have more complicated circumstances than most. BUT, it never hurts to get other opinions. I may shoot over a phone to mine because I don't see him for another year unless complications come up. And discuss it with him more - my case verses other patients.... Also, taking antibiotics continuously is not good either, it makes you more suseptible to the really bad bugs. Girl, you def need a PFT. Do you already have a baseline PFT?
@jkiemen Jo Ann, am wondering if maybe I don't need a second opinion?
@jkiemen Jo Ann, do you go to a teaching institution to see your I.D. dr? Or is he a local private practice? Thanks!
@lindam272 Linda, is your I.D. dr a private practice physician? Thanks!
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@lindam272 Good morning Linda. I was was cleaning out my mailbox and re-reading some of the older posts when I came across this one. I was wondering if you went back on antibiotics or are you on any kind of maintenance like inhaled saline?