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I was diagnosed with MAC in May 2015.
MAC & Bronchiectasis | Last Active: Jan 17, 2017 | Replies (85)Comment receiving replies
Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here .. I've learned SO much from our forum members .. good people! You will see that when I was diagnosed in 2007 .. was on 5 antibiotics for 30 months .. have been negative now since May 2014! See Dr. Timothy Aksamit, a specialist in MAC at Mayo Clinic at Rochester MN. I am now age 72 .. doing great .. exercising, traveling and living life!
I don't know how you feel about this .. but I have had GREAT experience with acupuncture for sinus/nasal issues. I also have bronchiectasis .. big time but have been told the terrific coughing is in part due to the sinus/nasal issues. I googled acupuncture in our area .. found a practitioner who graduated as an MD Internist in China .. PLUS had been brought here to teach acupuncture. SO .. do your "due diligence" .. find a good practitioner. I found 4 visits really helped my issues .. was told it can take 5-6 depending on the severity.
It worked so well for me I have now sent my husband who has suffered a LOT of sinus issues for a long time .. he has only gone 2 times and says he can see the difference already .. and he is a bit of a sceptic! I reminded him that in some countries they use acupuncture for surgeries!
In terms of the Rifampin .. my only side affect was a LOT of sleep disturbance .. which went away when I stopped taking it. But every person's body is different and will react differently. Hope this helps!
Stay strong .. stay positive .. stay happy!
Katherine/katemn
Replies to "Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here ....."
I feel for you! Been there, done that! Everyone is different but I tried to take the meds. 2 times and ended up in the hospital both times. SEVERE nausea to the point I could not talk. I have learned more on this site than from my doctor..... All he would say is " you have to take this medicine!" I am waiting to see how I progress and will seek another doctor. Good luck!<br />
Jan<br />
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Insomnia? I have no idea. Try adjust WHEN you take meds. I don't take them all at once, rather after breakfast, then the 'red urine' pills on an empty stomach before lunch. Right after dinner is the last pill. I think diarrhea is minimal with this method - next to none at all with me. Thankfully my cough has subsided but I must continue.
Jill
At Mayo they told me to take all three at night w dinner, except 2 hours after dinner for E drug. I am on day 4 and add Rifampin. I think if it causes sleep problems maybe change it tO AM w a meal. It seems to cause the most problems.
I hope changing around the times can help. I'm not excited to think of 18 months of this. Doing my best. Some nausea and lost some weight.
Maybe changing the times and taking Rifampin w food might help? I think part of my nausea is when I get upset. Sometimes getting busy w something takes it away.
Mayo Clinic Pharm also said if you can ride it out the side effects subside. Maybe just some time. Visualize those drugs eating up the nasty little bacteria.
It's all very difficult. Hang in there and keep us posted if you find some secrets to tolerating the meds!
Best
Kay
We need our lungs. The doc said meds wouldn't shorten my life but I hesitate to agree with him. Definitely some damage is done. I lost weight too. He told me to take meds in the morning. His schedule made me feel ill. I'll get them down best I can. Sometimes I think yogurt helps. Besides MAC may come back. Health Canada gave up trying to find the cause. Anyone near me coughs - I quickly turn away regardless they cover their mouth. Miserable disease.
Well I dont worry about mt life being shortened, i worry about trying to live a healthy life and feeling positive. We are only here for a short while anyway, so why not make the best of it. My doc didnt tell me when to take meds, he just told me to take them, so i take then in the afternoon cause i take blood pressure meds in the morning. Keep your head up. I will pray for you and hope that you start to feel better.
I've been on meds for six months. I take rifampin in tues thurs and Saturday morning before breakfast and the others on non we'd Friday close to bed time after meal or snack so side effects if any are during the night doesn't ruin my day<br><br>
I take rifampin in Tuesday Thursday and Saturday mornings before breakfast.<br>I take the others Ted end of day Monday Wednesday and Friday's. Have few side effects at bedtime which have subsided. I have great days everyday. Been on meds six months<br>Having CT scan today<br><br>
My cough went away too<br><br>
Cathy, let me know how goes the CT scan. Seven (8) months for me.
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I just started on the 3 typical antibx for MAC 2wks ago. I have lost my appetite, constantly thirsty, red urine, insomnia and the worse nausea.... Any suggestions?