1. < MAC & Bronchiectasis

I was diagnosed with MAC in May 2015.

Posted by pamelasc @pamelasc1, Feb 25, 2016

Hello - I have just joined the group - I was diagnosed with MAC in May 2015. I began the treatment of the 3 antibiotics 3 times a week in October 2015. I plan to stay with the treatment for the 18 months, or longer if I have to. I am 66, thin, 5' 7" and also have bronchiestisis. My question is: when taking these meds, my sinuses act up off and on - lots of nasal drip and then it goes into my sinus as if I have a sinus infection. It lasts for a week or so, then goes away. It comes and goes. I think maybe it is the Rifampin, but not sure. Does anyone else have this problem? Many thanks, Pamela in the Boston area

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Kay Strand | @kaystrand | Aug 2, 2016
In reply to @katemn "Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here ....." + (show)
@katemn

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

Jump to this post

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

REPLY
tessie | @tessie | Aug 2, 2016
In reply to @katemn "Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here ....." + (show)
@katemn

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

Jump to this post

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.

REPLY
Sophie | @sophie1019 | Aug 2, 2016
In reply to @katemn "Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here ....." + (show)
@katemn

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

Jump to this post

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.

REPLY
cathyt | @cathyt | Aug 3, 2016
In reply to @katemn "Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here ....." + (show)
@katemn

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

Jump to this post

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>

REPLY
cathyt | @cathyt | Aug 3, 2016
In reply to @katemn "Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here ....." + (show)
@katemn

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

Jump to this post

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>

REPLY
cathyt | @cathyt | Aug 3, 2016
In reply to @katemn "Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here ....." + (show)
@katemn

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

Jump to this post

My cough went away too<br><br>

REPLY
tessie | @tessie | Aug 3, 2016
In reply to @katemn "Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here ....." + (show)
@katemn

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

Jump to this post

Cathy, let me know how goes the CT scan. Seven (8) months for me.

REPLY
tessie | @tessie | Aug 3, 2016
In reply to @katemn "Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here ....." + (show)
@katemn

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

Jump to this post

thanks Sophie. Your attitude gives me some comfort. I admit skipping the odd day off meds, only once or twice tho. The process is too long but as we know it's hard to kill.

REPLY
Sophie | @sophie1019 | Aug 3, 2016
In reply to @katemn "Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here ....." + (show)
@katemn

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

Jump to this post

I have great days too. I take my meds at 5 or 6, when eating. I don't have any side effects. I have one month down. But just glad to be alive and feeling well....

REPLY
Katherine, Alumni Mentor | @katemn | Aug 3, 2016
In reply to @katemn "Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here ....." + (show)
@katemn

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

Jump to this post

Hi Tessie, I know the journey sometimes seems long and tough .. but I encourage you never to skip your meds. Those mycobacterium are kina sneaky fellows .. we want to always keep one step ahead of them! Just remember that you are a Warrior and they are the enemy .. AND you ARE going to be the Victor! You WILL NOT let them win!

Tessie, you will be surprised how fast the time goes .. just be present to each day we are given .. enjoy THAT day. Remembering that many people are no longer given this particular day .. that we are blessed for each day! I am sending you a hug! Katherine (and another one to Sophie is a wonderful light on our Forum!)

REPLY
View MoreView Less
Please sign in or register to post a reply.