Good luck with your endoscopy!
 

I know it is so confusing when you don't know exactly how I got this. They say that it is the MAC infection is what may have caused the bronchiectasis or vice versa? The doctor says some people can live with the MAC infection without taking an antibiotic if they aren't having any symptoms that bother them. But yet they say that the infection can cause your lungs to worsen, so why would they let people live on with the infection without treatment? The doctor told me they would have to watch you on a regular monthly basis & CT scans to make sure it hasn't gotten worse.

Thank you for your information! I hope you stay well and able to stay active for as long as you can! so you are not going to take any antibiotic at all to get rid of MAC?

@anr38 .. do you have a first name .. more personal! My thought .. first I would recommend you read through the past pages of our Forum .. you will really educate yourself to your MAC disease .. you will feel SO much better by educating yourself .. more in power of your journey ... better able to advocate for yourself AND your medical choices.
BECAUSE NO ONE knows how ANY single one of us got MAC. There are LOTS of theories .. but there is little research for our disease .. so no definitive decision. Truthfully .. just THINK of the MILLIONS of dollars thrown at cancer research .. still not all the answers yet. SO my dear .. do NOT put your energy in asking WHY .. put your energy into educating yourself .. THEN getting the very best medical care possible! THAT is my opinion! By educating yourself you will END your confusion .. as you read you will realize WHY you should NOT be treated UNTIL the CT scan and sputum culture results show YOU should be treated. IF you have a GOOD doctor .. trust them. After reading the back pages you should be able to judge ALL your lung health! Feel free to ask us all your questions .. we have all walked your same journey! Sending you a hug! Katherine

Kate
So good to see you back posting your intelligent and caring thoughts. We hope you and your husband are both feeling better. You are wise to take time off to recover.

Kate, you are missed when you are away, you are such a bright light to others along with practical advise.

Please continue to take care. Glad to have some "hugs" back.

Kay S.

RICHARD .. I ONLY POSTED BECAUSE I SAW NO ONE WAS ANSWERING A NEWCOMER .. I JUST CUT/PASTED FROM MY FILE CABINET .. ONLY TOOK A MINUTE

Hugs,

   Katherine

..... OOPS! I meant this for my husband .. so he wouldn't get after me for being on Connect when I am supposed to be resting!! OOPS! My error! Katherine

Thank you Katherine! my name is Angie and I just turned 46 in April. I have benign tumor in my left temporal (since it is in my speech and comprehension area) they will not remove it so I was put on a trial study 8 years ago with a pacemaker that was placed in my skull, this has been a long journey for as well as having a hard time with side effects of seizure medications. When i was diagnosed a couple months ago with bronchiectasis and MAC infection, this was even more devastating and shocking than dealing with my brain surgery and tumor!! They think I may have developed the MAC from "aspiration", but of course don't know for a fact. What is so strange is i've had this clear constant runny nose, daily coughing and fatigue for the last 3 to 4 years which I assumed was a side affect of a new seizure medication i had started. So I just don't know if i should try and come off this seizure medicine and see if these side affects go away or did it just happen coincidentally at same time? I had started the 1st antibiotic almost 2 weeks ago and it is causing me problems with sleep and don't know if i should see if i will get use to it or try another kind of antibiotic, but my body is so sensitive to all medications so i believe i'm going to have a problem with any med!?
It's been interesting listening to everyone else with the same similar problems!! Hope you have a good day!

@anr38, Angie, we are so glad you found us .. and I am hoping our wonderful Community will hop on with MORE great advice for you PLUS support .. as I am on "Sabbatical" battling my own issues. But I pulled the below from my File Cabinet .. I hope some of it might help you! DO NOT put an ounce of energy trying to figure out HOW you got MAC/Bronchiectas .. "What is .. IS" .. NOW put ALL your energy into battling these nasty critters! YES, these side effects WILL subside .. when .. depends on each of our bodies .. as you read through the back pages you will realize that! DO READ the back pages .. EDUCACATE yourself! Knowledge is Power! Sending Hugs to all! Katherine
ANTIBIOTICS .. SCHEDULING .. STARTING Since you already started one of your meds .. I would recommend that you request that you wait to start EACH NEW antibiotic at intervals of AT LEAST ONE WEEK .. before adding another antibiotic .. so you can tell EXACTLY which/what antibiotic is causing ANY potential side effect and you can isolate it .. hopefully watching for a side effect dwindling etc. THEN introduce another antibiotic. Frankly WE are in the driver’s seat in our own lives .. our own bodies. Take charge and request that type of schedule if you want it!
ANTIBIOTICS .. SCHEDULING ..DIFFERENT MEMBERS
TIP: REQUEST 90 DAY PRESCRIPTIONS FOR ALL YOUR ANTIBIOTICS .. THEN YOU HAVE JUST ONE CO PAY.
BEST 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
OR @lindam272,Linda The Rifampin gives me the most trouble of all the meds. I take 2 Rifampin and a Digestive Advantage probiotic all at once with a full bottle of water when I first get up in the morning. By the time I do my breathing treatment and get ready for my day, an hour has gone by and I have a light breakfast. I was taking the Zithromyacin with breakfast but it was giving me heartburn, so I pushed it out another hour which has helped. I take the Rifampin between 6:30 - 7 a.m., the Zithromyacin at 9a.m. and 3 Ethambutol between noon and 1:00 when I have lunch. What I like about the way I'm taking these meds, is that I'm done by noon or 1:00. I can then take my vitamins and other supplements with dinner which is a good 4 - 6 hours after my last MAC med.

Just for the record, @katemn, the MAC community welcomed Angie when she first posted on May 4. You'd be proud how everyone is stepping up and supporting each other. So great to have you pull info from the file cabinet and add it here. Tell Richard we promise to send you back to bed if we see you getting too active here and tiring yourself 🙂 We want you healthy as much as you do (and Richard does).