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

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Katherine, Alumni Mentor | @katemn | Jan 14, 2017
In reply to @sophie1019 "Thank you. Anyone that needs,a,word of encouragement, email me....Lord knows I needed a kind word when..." + (show)
@sophie1019

Thank you. Anyone that needs,a,word of encouragement, email me....Lord knows I needed a kind word when i first started out...

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Calling EVERYONE .. and especially newer members .. @sophie1019 and @kaystrand .. please reach out to @dianelobosco .. she is new and SO scared .. you well know how scary it is in the beginning .. you would be WONDERFUL help in her beginning journey with your positive spirit and gumptions! Hugs to you all! Katherine

REPLY
jillnalani | @jillnalani | Jan 14, 2017
In reply to @mellany "I too was diagnosed with MAC in May of 2015 and have been on the 3..." + (show)
@mellany

I too was diagnosed with MAC in May of 2015 and have been on the 3 antibiotics since then. I take all three meds on M-W-F, but appreciate the post about splitting it up and taking the Rifampin on different days. I was very nauseated along with diarrhea for the first few months taking the antibiotics, but that has subsided somewhat since taking them all before bedtime. However, I have had a persistent cough for months now which won't go away. I even had an upper GI which showed no reason for the cough. My doctor put me on Prilosec for an unspecified length of time which he said helped him with his cough. I feel like I have phlegm constantly in my throat which causes me to have to clear my throat and then I have coughing spasms. which It is worse at times than others. After 6 months of antibiotics I had another CT scan which showed that the bacteria was the same - no better and no worse. I started taking CBD oil several months ago which helps me sleep better and now am vaping the CBD oil which I am hoping will help the antibiotics work FASTER!!!!

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I take my antibx daily. SIGH

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tessie | @tessie | Jan 14, 2017
In reply to @mellany "I too was diagnosed with MAC in May of 2015 and have been on the 3..." + (show)
@mellany

I too was diagnosed with MAC in May of 2015 and have been on the 3 antibiotics since then. I take all three meds on M-W-F, but appreciate the post about splitting it up and taking the Rifampin on different days. I was very nauseated along with diarrhea for the first few months taking the antibiotics, but that has subsided somewhat since taking them all before bedtime. However, I have had a persistent cough for months now which won't go away. I even had an upper GI which showed no reason for the cough. My doctor put me on Prilosec for an unspecified length of time which he said helped him with his cough. I feel like I have phlegm constantly in my throat which causes me to have to clear my throat and then I have coughing spasms. which It is worse at times than others. After 6 months of antibiotics I had another CT scan which showed that the bacteria was the same - no better and no worse. I started taking CBD oil several months ago which helps me sleep better and now am vaping the CBD oil which I am hoping will help the antibiotics work FASTER!!!!

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I do not recommend 'splitting it up and taking the Rifampin on different days'. I tend to disagree. You must take them M-W-F with Doc's instruction. We need to kill the bacteria. My last check up MAC hasn't grown which I am thankful. I hate red/orange urine but my schedule is Rifampin in the early AM before coffee. Therefore if you wake up a little early (set the alarm), take these 2-pills with water, then you can rest/eat after 1-hr. As you know the other pills take with food. I take mine all immediately after dinner which seems to work better. The diarrhea only occurs occasionally - much better to cope with though. Whew. God Bless.

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Kay Strand | @kaystrand | Jan 14, 2017
In reply to @mellany "I too was diagnosed with MAC in May of 2015 and have been on the 3..." + (show)
@mellany

I too was diagnosed with MAC in May of 2015 and have been on the 3 antibiotics since then. I take all three meds on M-W-F, but appreciate the post about splitting it up and taking the Rifampin on different days. I was very nauseated along with diarrhea for the first few months taking the antibiotics, but that has subsided somewhat since taking them all before bedtime. However, I have had a persistent cough for months now which won't go away. I even had an upper GI which showed no reason for the cough. My doctor put me on Prilosec for an unspecified length of time which he said helped him with his cough. I feel like I have phlegm constantly in my throat which causes me to have to clear my throat and then I have coughing spasms. which It is worse at times than others. After 6 months of antibiotics I had another CT scan which showed that the bacteria was the same - no better and no worse. I started taking CBD oil several months ago which helps me sleep better and now am vaping the CBD oil which I am hoping will help the antibiotics work FASTER!!!!

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Tessie
I was taking my Ethambutol and Azithromycin w food too, but Dr. Huitt, from National Jewish, kind of lead doc on MAC, says definitively take on an empty stomach to be sure they are absorbed. I changed to do this, used to take with dinner, I feel better. I think they work better on empty stomach.

Others?

Thanks
Kay Strand

REPLY
Katherine, Alumni Mentor | @katemn | Jan 14, 2017
In reply to @mellany "I too was diagnosed with MAC in May of 2015 and have been on the 3..." + (show)
@mellany

I too was diagnosed with MAC in May of 2015 and have been on the 3 antibiotics since then. I take all three meds on M-W-F, but appreciate the post about splitting it up and taking the Rifampin on different days. I was very nauseated along with diarrhea for the first few months taking the antibiotics, but that has subsided somewhat since taking them all before bedtime. However, I have had a persistent cough for months now which won't go away. I even had an upper GI which showed no reason for the cough. My doctor put me on Prilosec for an unspecified length of time which he said helped him with his cough. I feel like I have phlegm constantly in my throat which causes me to have to clear my throat and then I have coughing spasms. which It is worse at times than others. After 6 months of antibiotics I had another CT scan which showed that the bacteria was the same - no better and no worse. I started taking CBD oil several months ago which helps me sleep better and now am vaping the CBD oil which I am hoping will help the antibiotics work FASTER!!!!

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Kay, GOOD info from a trusted source! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 14, 2017
In reply to @mellany "I too was diagnosed with MAC in May of 2015 and have been on the 3..." + (show)
@mellany

I too was diagnosed with MAC in May of 2015 and have been on the 3 antibiotics since then. I take all three meds on M-W-F, but appreciate the post about splitting it up and taking the Rifampin on different days. I was very nauseated along with diarrhea for the first few months taking the antibiotics, but that has subsided somewhat since taking them all before bedtime. However, I have had a persistent cough for months now which won't go away. I even had an upper GI which showed no reason for the cough. My doctor put me on Prilosec for an unspecified length of time which he said helped him with his cough. I feel like I have phlegm constantly in my throat which causes me to have to clear my throat and then I have coughing spasms. which It is worse at times than others. After 6 months of antibiotics I had another CT scan which showed that the bacteria was the same - no better and no worse. I started taking CBD oil several months ago which helps me sleep better and now am vaping the CBD oil which I am hoping will help the antibiotics work FASTER!!!!

Jump to this post

@tessie Hi Tessie .. you are correct. I have been told:
. RIFAMPIN: Take this medicine on an empty stomach .. OR either 1 hour before or 2 hours after food NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds! (Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Be aware it can cause: Reddish discoloration of Stool or Urine etc.)

I've been told:
ETHAMBUTOL AND AZITHROMYCIN: BEST with an empty stomach! .. BUT either 1 hour before, or two hours after meals! (taking BOTH at one time gives “greater punch!” (NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds!) * take with a LIGHT snack at most.

BUT Tessie, we EACH must work with our Pulmonologists AND our bodies to see just what schedules works best for US! Each of our bodies are different .. our mycobacterium is different .. how we react is different .. THAT is why we must all do our OWN 'due diligence' .. but then also work along side our doctors for our own best care! Hugs! Katherine

REPLY
jillnalani | @jillnalani | Jan 14, 2017
In reply to @mellany "I too was diagnosed with MAC in May of 2015 and have been on the 3..." + (show)
@mellany

I too was diagnosed with MAC in May of 2015 and have been on the 3 antibiotics since then. I take all three meds on M-W-F, but appreciate the post about splitting it up and taking the Rifampin on different days. I was very nauseated along with diarrhea for the first few months taking the antibiotics, but that has subsided somewhat since taking them all before bedtime. However, I have had a persistent cough for months now which won't go away. I even had an upper GI which showed no reason for the cough. My doctor put me on Prilosec for an unspecified length of time which he said helped him with his cough. I feel like I have phlegm constantly in my throat which causes me to have to clear my throat and then I have coughing spasms. which It is worse at times than others. After 6 months of antibiotics I had another CT scan which showed that the bacteria was the same - no better and no worse. I started taking CBD oil several months ago which helps me sleep better and now am vaping the CBD oil which I am hoping will help the antibiotics work FASTER!!!!

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TY

REPLY
jillnalani | @jillnalani | Jan 14, 2017
In reply to @mellany "I too was diagnosed with MAC in May of 2015 and have been on the 3..." + (show)
@mellany

I too was diagnosed with MAC in May of 2015 and have been on the 3 antibiotics since then. I take all three meds on M-W-F, but appreciate the post about splitting it up and taking the Rifampin on different days. I was very nauseated along with diarrhea for the first few months taking the antibiotics, but that has subsided somewhat since taking them all before bedtime. However, I have had a persistent cough for months now which won't go away. I even had an upper GI which showed no reason for the cough. My doctor put me on Prilosec for an unspecified length of time which he said helped him with his cough. I feel like I have phlegm constantly in my throat which causes me to have to clear my throat and then I have coughing spasms. which It is worse at times than others. After 6 months of antibiotics I had another CT scan which showed that the bacteria was the same - no better and no worse. I started taking CBD oil several months ago which helps me sleep better and now am vaping the CBD oil which I am hoping will help the antibiotics work FASTER!!!!

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I take my pills daily. Seems like everyone else takes their x3 ally.

REPLY
Katherine, Alumni Mentor | @katemn | Jan 14, 2017
In reply to @mellany "I too was diagnosed with MAC in May of 2015 and have been on the 3..." + (show)
@mellany

I too was diagnosed with MAC in May of 2015 and have been on the 3 antibiotics since then. I take all three meds on M-W-F, but appreciate the post about splitting it up and taking the Rifampin on different days. I was very nauseated along with diarrhea for the first few months taking the antibiotics, but that has subsided somewhat since taking them all before bedtime. However, I have had a persistent cough for months now which won't go away. I even had an upper GI which showed no reason for the cough. My doctor put me on Prilosec for an unspecified length of time which he said helped him with his cough. I feel like I have phlegm constantly in my throat which causes me to have to clear my throat and then I have coughing spasms. which It is worse at times than others. After 6 months of antibiotics I had another CT scan which showed that the bacteria was the same - no better and no worse. I started taking CBD oil several months ago which helps me sleep better and now am vaping the CBD oil which I am hoping will help the antibiotics work FASTER!!!!

Jump to this post

@jillnalani, see my note to @tessie .. hope that helps you also!
RIFAMPIN: Take this medicine on an empty stomach .. OR either 1 hour before or 2 hours after food NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds! (Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Be aware it can cause: Reddish discoloration of Stool or Urine etc.)
I've been told:
ETHAMBUTOL AND AZITHROMYCIN: BEST with an empty stomach! .. BUT either 1 hour before, or two hours after meals! (taking BOTH at one time gives “greater punch!” (NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds!) * take with a LIGHT snack at most.
BUT Tessie, we EACH must work with our Pulmonologists AND our bodies to see just what schedules works best for US! Each of our bodies are different .. our mycobacterium is different .. how we react is different .. THAT is why we must all do our OWN 'due diligence' .. but then also work along side our doctors for our own best care! Hugs! Katherine

REPLY
dianelobosco | @dianelobosco | Jan 14, 2017
In reply to @sophie1019 "I have MAC. Does anyone have MAC??????" + (show)
@sophie1019

I have MAC. Does anyone have MAC??????

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I went and saw my pulmonary dr 1/3/2017. He discussed whatvwas fkund and told me that i would get a referall ti an infectuous disease dr. He precribed azithromycin and got me started on it. I just saw the infectious disease dr on 1/11/2017. She took me off of the azithromycin, and said ti wait till we know what antibiotics will work for me. She said it can take upnto 6 weeks. My next appt at this rime in 3/12/2017. Unless she gets the report sooner. I am worried that I will cause damage to my lungs. Ibwant to gwt started and hopefully beat this.

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