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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!
I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!
I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!
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January 2017 Update
One of our great Connect Members .. @Paula_MAC2007 .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!
If you have the "MS Word" program on your computer:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as: Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.
Then as you want to refer back to something in the future .. YEAH! You have now created your own personal "file cabinet" on MAC/MAI! Go to it!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Stupid question, I just stumbled across all of you so when I get off how do I get back in the group. You are all amazing and I am thankful that I now can share with others. Terri I live in South Florida and yes I have bronchietsis as well. Oh and how can I get started on the saline treatment?
Sorry, I’m responding all over the place. I do have bronchiectasis. I took three pills for two weeks but I couldn’t continue. I have a hard time breathing sometimes, I am very tired at times after work so I nap, I cough up mucus in the morning but I don’t have a cough. I told my drs that I do get a chill through my body once in while and I get night sweats at times.
Hi @soflo, welcome to Mayo Clinic Connect. You are following the MAC group and should be receiving email notifications when now posts are made. Here is the link to the MAC & Bronchiectasis group: https://connect.mayoclinic.org/group/mac-bronchiectasis/
There's a lot of information archived in the many discussions. Members are very helpful and informed in this group and ready to answer your questions.
To get the most out of Connect, you can find more tips on how it works here: https://connect.mayoclinic.org/get-started-on-connect/
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1 Reaction@soflo Hi, I read your post to Terri. I am new too. I just started the big 3 treatment, my doctor had me start the first antibiotic three days a week, Mon Wed & Fri for two weeks, then I will start the 2nd one the same way, then the third one the same way, it gives your body a chance to adjust to them before adding the next one. I just finished the two weeks with the first one, Azithromycin, starting Rifampin tomorrow, for two weeks then Ethambutol. So far I have no side effects. I am also doing the Nebulizer with Albuterol, the Capella that you blow through, & laying on a slant downward on your back for 5 min & again on your stomach for 5 min. These exercises promote clearing the mucus from your lungs, I also don’t cough up much mucus unless I do these exercises with the nebulizer. I am feeling better already, I have more energy & able to do the things I like & normally did, like riding my horse 3 times a week & gardening two days a week. Most importantly, “Keep a positive attitude”.
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2 ReactionsI am glad to hear that you are not experiencing any side effects from your new antibiotics. My husband will probably start on the big 3 at the end of the month. We are currently waiting for the results from his bronchoscopy which was sent out to the Jewish Institute in Colorado. Are these antibiotics expensive. We have Medicare and a very good supplemental that normally pays 80 - 90%.
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1 Reaction@windwalker, please let me know when your face book page is up. I follow your posts here but sometimes I find it difficult.
I live in Spring Hill Fl and I am really in need of good Dr’s who have knowledge on MAC with the cavitations and bronchitis? Not sure I spelled that last on correct. Does it take a long time to get into the Mayo Clinic? I did 1 year of the big 3 and I just could not continue the treatment 7 days a week!
Now I am horrified of what is to come next. My ID Dr has not treated anyone before me and my pulmonary Dr is very old school and I never got a clear answer as to if he has treated others like me.
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1 ReactionHi Soflo: I took the big 3 for 2 years almost, and it does inhibit the growth of the bacteria. However the pills also affect your organs. I am older than you, 70 so I got gerd, severe bowel cramps, rash, ear noise, (tinnitus) eyesight deterioration, and heart palpatations. I am ther only one in my family to have these conditions but also the only one with bronch and MAC. So, when I got nauseus, I ate. I kept a bag of animal crackers (favorite!) with me at all times and that seemed to do the trick. Never take on empty stomach and don't worry about weight, you will lose tons. But, if I were you I would only take for one year. The bacteria is very slow growing!! so no worries, it will not kill you tomorrow, and because you are youngish, they may have a nice inhalant coming on the market in the next 5 years that bypasses the organs and goes straight to the lungs. Research NITRIC OXIDE, In stage 2 clinical trials with great success. You are in pretty good shape, even if you start coughing blood, as I do, it always seems to stop and life goes back to normal. I even went to europe and got ill, sore throat, felt horrible, and for 100 euros!!! , had a doc come to hotel and prescribe amoxycillan. I told him if I got pneumonia I would die so he got right on it, Kicked it, fine now. So stay on this sight and do your own research as we are the guinea pigs for this disease, no one really knows.. If your oxygen is high, in the 90's, and you STAY AWAY FROM HOSPITALS AND ANYONE SICK, FORGET THE GIANT XMAS PARTY, Then you will be fine. Keep your cookies close. xoxo Christa
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2 ReactionsSoflo: ps forgot to say, the saline inhalant is great, get that, and even though you will be very tired, keep moving, the more exercise the better. xo Christa
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2 Reactions@carla1196 I live in Palm Harbor and know of no one in Spring Hill...my doc is well regarded and a MAC specialist but he's down here by me...name is Linares...a bit of a schlep but far closer than Mayo which is in northeast FL thus hours away from us.
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1 Reaction@windwalker I am...and same back atcha!