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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21, 2024 | Replies (9354)Comment receiving replies
I was recently diagnosed with MAI by Dr. Adam Anderson at Washington University in St. Louis, Mo. Have only seen him 1 time last Oct but his nurse has kept in good contact with me since my first visit. He ordered all the usual pulmonary tests that I had before ordered by my pulmonologist and then Dr. Anderson ordered the sputum test and when it came back positive, he then had me do 2 more 20 days apart to make sure they came back positive and they did. He started me on the Big 3 antibiotics Jan 20th and I go back to him April 28th and have appointment for more testing the morning before I see him. His nurses name is Anne Ellis and if I call her, she either answers or gets back to me within an hr. I ask my questions and she gets back to me within 3 hrs . So far I'm happy with him as I feel better than I have in yrs. I can actually breathe. I have the aches and pains of body ache and terrible hot flashes all night and I'm very fatigued but I can breathe. He also ordered a Smart Vest and I believe that has helped a lot. I do it 2 times a day. I do intend to ask Dr. Anderson how many MAI patients he's treating. According to his nurse Anne, he will start monthly sputum tests, and blood work to check my kidneys and liver when I see him again. Will also be asking him about hearing and vision testing at that time. I am a winter Texan and have been gone from the St. Louis area since Dec so that is why he hasn't started the other testing according to his nurse. My pulmonologist referred me to an infectious dr who put me on infusions every 8 hrs for 2 wks and when that didn't stop the coughing his office got me into Dr. Anderson at Washington University. Took from July to Oct to get into see him and that was with the infectious dr's office making the appointment. If you want his #, I can give it to you.
Replies to "I was recently diagnosed with MAI by Dr. Adam Anderson at Washington University in St. Louis,..."
@ling123, did you find it yet?
Beck
I think so. I opened the link you provided, it took me to Live Event for "Carolyn and Matthew Bucksbaum Nontuberculous Mycobacteria (NTM) Lecture Series For Patients and Families". Each topic has a link to a video. Haven't have time to watch them yet. Thank you so much for your help.
Becky33...thanks for explaining TBM...when I was at NZjH in January they added a CAT scan of the area and ruled it out.terrid
@becky33, Becky, WOW Girl, have you been through the wringer! I am also age 73 and although I have had my health issues .. I can't even conceive of all the things this Toughie has been through! You are one survivor! You can be proud of yourself! You have one great attitude .. " I can walk 2 miles at a time, I can dance"! Sending you a Big Hug and keep coming back! Katherine
One thing that came to my mind .. with your nausea with the antibiotics have you tried this from my File Cabinet:
Here from one of our members is what I think is REALLY good advice on starting the antibiotics .. hope it helps you! Keep in mind .. YOU may NOT feel "lousy" the first month .. each of our bodies are DIFFERENT .. each of our bodies will react differently .. but the advice I just excellent!
SCHEDULING ANTIBIOTICS From Member @pamelasc1, I began the 3 pill regimen. I did feel very lousy the first month but was told to hang in there, that it gets better each week- and it did! I will tell you how I take my pills, as timing can help, as can taking other supplements. I take them between 9 and 10 PM, just before going to bed. I take with a lot of water. I try to put a minimum of 2 hours between eating dinner and taking the pills. Every day I take a probiotic to help the gut - the antibiotics wreak havoc with the gut. This can help with nausea - I take my probiotic with breakfast or lunch - do not take it late in the day. I use Ultra Jarro-Dophilus - 50 billion per capsule - will find in the frig at any health food store - I open up the capsule and drop in a bit of applesauce, stir it up and eat. I also take Vit D3, 2000 IU and B6, 50 mg. After my stomach settled down in about a month, the side effects I have been left with are fatigue and weight loss, sometimes night sweats, and insomnia. Remember to take the pills at the same time of the day, so if you go on a schedule like mine, just stick to it by taking the pills two hours or so after eating a meal. This way I found I slept through the nausea for the most part. And as has been suggested, read through all the earlier posts - they are VERY helpful! Good luck and just have faith your nausea will get better. Pamela
@chinasmom, Becky, thanks for jumping in to support Becky33, I agree .. what a journey she has had! You gave her some great advice .. thank you!
In terms of your situation .. you said " I just finished a round of ciprofloxacin for a pseudomonas aureus and don't think it helped much."
Becky, I will be honest with you. When I as diagnosed with MAC .. on 4-5 antibiotics for thirty months .. I was SO focused on getting better .. healthy again .. I hardly even noticed that my medical records ALSO said that I had Bronchiectasis. It was ONLY months later when I had settled back into my life that I started googling Bronchiectasis that I realized that DARN .. I have a SECOND serious disease. The reason I am pointing this out is NOT to scare you .. BUT as you know .. I am big on "Knowledge is Power" .. so I now want you to educate yourself to your Bronchiectasis. Google it. Just ONE that will come up is:
http://www.resmedjournal.com/article/S0954-6111(16)30131-7/fulltext
I am pointing this out because I also just ended a 28 day 2x a day regime of Cipro for Pseudomonas that I don't think "took". So just today I took a sputum culture for a smear and culture .. a follow up. That is what I'd advise you also to do. Bronchiectasis is NOT anything to fool with. Hope this is helpful .. not scary. Hugs! Katherine
<br><br><br><br><br>Becky, that sounds like an aweful thing to tolerate. Is this <br>reversable?<br> <br><br>
Connect
http://Www.nationaljewish.org/ntmvideos2016. I dont know how to put in a link but, That should get you there. If not let me know.
Becky