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Thu, Apr 18 10:11pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Dr. Adam Anderson at Washington University, St. Louis, Mo had me take 3 sputum tests one month apart and all 3 had to be positive before he would put me on the 9,300mg of antibiotics per wk. I had a sputum test every month until I had a negative sputum test for MAI. It took 15 months for the first negative. Dr. Anderson said it usually takes about 1 yr for the meds to work and you get a negative. I was getting worried that I was one of the "untreatable" one's but finally did get a negative in the 15th month. Dr. Anderson, then wants you to stay on the big 3 for 12 mo's after the first negative. I finished the 27 months of antibiotics last night!!!! yeah!!! Dr. Anderson has ordered a CAT scan of my lungs and a lung function test next Tues. Tonight my ins company Aetna/Medicare through BP Amoco called to say they will not pay for the CAT scan without a chest xray in the last 6 mo's. Will call Dr. Anderson's nurse tomorrow and I'm sure she will handle this for me. I have never called Dr. Anderson's nurse Anna without her answering the phone or calling me back within an hr. I highly recommend Dr. Adam Anderson at Washington University, St. Louis, Mo. I feel great FINALLY

Wed, Apr 17 5:01pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Also want to add that Dr. Anderson is having a CAT scan of my lungs and a lung function test ran next wk so he will have a guide line to begin my journey without MAI.

Wed, Apr 17 4:58pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Today is a big day in my life!!! I take my last does of 9,300 mg of antibiotics a wk for 27 months!!!!!!!!! Can't wait to see what "normal" feels like without all these antibiotics in me. It took 15 months before I got a negative sputum test back and my Dr Adam Anderson at Washington University, St. Louis, Mo wanted me to take the meds for 1 yr after the first negative sputum test for MAI. This journey has been a looooooooong very loooooooong one and not for sure when it even started because I've felt so bad for so long before I was diagnosed with MAI. I had been treated for asthma/COPD/lung infection etc etc etc for over 10 yrs before I was properly diagnosed. Was very lucky tho because during all the testing being done to find out why my lungs were infected all the time a tumor was found on my kidney so had to have that removed and also during testing discovered that I was among the 5% of people who do not respond to acid reflux meds so also had to have a Nissan Fundoplication operation to correct the acid reflux. Thought that would correct all the infection and coughing but didn't so still more testing. In one 12 mo. period I was on antibiotics and steroids 19 times!!!! I would do OK while on the meds but within 3 or 4 days being off of them I'd start coughing and being infected again. Finally after so many dr's I lost track I was sent to the right one who tested me for MAI and now FINALLY hopefully my MAI journey is ending as of tonight when I take the last dose of the big 3. I can now breathe, I can ride my bike, I can dance and I can walk 2 to 3 miles with no problems and I'm 75 yrs old!!!! So please pray that there are no hidden bugs hiding in my lungs just waiting for the antibiotics to cease so they can start growing again. I feel blessed and I feel good!!!

Jul 30, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

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.

Jul 25, 2017 · MAI drug resistant?? in MAC & Bronchiectasis

After 7 full month’s of taking the big 3 my monthly sputum tests have come back positive again. Dr Anderson at Washington University in St. Louis is going to test me for being resistant to the big 3. What will happen if I am drug resistant? Anyone have that experience? I was diagnosed with MAI Jan 2017 and started the drugs on 1-20-17. Went to Dr. Joseph Craft my cardiologist for routine check up and he thought it was very strange because I was the 3rd MAI patient he’d seen in 6 mo’s in the St. Louis, Mo. area. Dr Craft said we were all female, white, and in our mid 70’s. Any of you from the St. Louis area that go to Dr. Craft? So upset over not being able to get a negative sputum culture after 7 mo’s. Need some encouragement???

May 3, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

We are dry and safe except for the constant rain. We live on top of the bluff at Clifton Terrace hill off the River Road. We can not get to Alton via the river road right now.
Was happy with dr’s appointment. In Dec my breathing function was at 71% and Fri is was up to 84%!!!!!!! Did a sputum sample Fri, Sat, and Sun so will wait the 20 days to see what that shows. Dr Anderson was very positive about the 3 cultures being negative because of how well I’ve responded to the meds since Jan 20th. If all 3 are negative he said he will start me on the 12 monthly negative sputum cultures. As far as all my aches/pains and hot flashes go he said nothing he could do but take me off the meds and unless I insisted he would not do that. Said if I stopped the meds and MAI came back I could be resistant to the meds so of course don’t want that so will just suffer with all the side effects the meds have brought me. He did suggest an eye test but when I told him I’d read on one of the sites to read the stock page daily in the newspaper and if the small print was blurry 2 days in a row to call him immediately. He did not seem too concerned about the meds affecting my hearing. Told me to eat yogurt daily. He did blood work but haven’t gotten that result back yet. Go back to him in Sept to see how my breathing is doing by then. We discussed the Smart Vest and are both in agreement that it has been a main thing in helping my breathing scores to go up. Flying to Ca. tomorrow to visit my nephew so will be my first experience flying with this heavy piece of equip.

Apr 24, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Go to National Jewish video’s that you can access via this website. Listen to the dr’s talk about MAC. Got all the info I needed from listening to them.

Apr 13, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I live in Godfrey, Il which is about 40 min north of the Arch in downtown St. Louis. We live right on the Mississippi River close to Alton, Il. Where do you live??