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

@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 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

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@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

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@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.

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@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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@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

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@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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@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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Hi @mellany, welcome to the MAC group on Connect. Was CBD prescribed by your pulmonologist? I might be concerned about vaping given that you have a lung condition. I also question whether CBD could help antibiotics work faster. You may wish to speak to your doctor or pharmacist about that or review this article and search tool to check for drug interactions with cannabis https://www.drugs.com/drug-interactions/cannabis.html

Please let us know what you find out.

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Colleen thank you for this excellent advice for our MAC members .. plus our members should make sure that cannabis/medical marijuana is legal in their particular state as it is not legal yet in all states. Hugs to all! Kahherine

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@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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Hi ColleenThank you for your response to my post.  I looked on the list of drugs that interact with CBD and none of the three antibiotics are listed.  Since CBD is an inflammatory, I would think that it would help and not hinder.  I haven't talked with my doctor about it because doctors sometimes get upset if you go beyond the normal prescribed medicines.  CBD is legal in Mississippi as long as it has a minimum amount of THC in it.  Since the CBD that I am taking is made from hemp, there is .3% THC, which is the legal limit.  I may re-think the vaping though, because after two days, I developed a horrific cough!  But my husband has the same thing, so I believe we must have bronchhitis.  I have an appointment with my doctor in the morning and will find out more then.

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@katemn

Colleen thank you for this excellent advice for our MAC members .. plus our members should make sure that cannabis/medical marijuana is legal in their particular state as it is not legal yet in all states. Hugs to all! Kahherine

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The CBD that I am taking is made from hemp and contains .3% THC which is legal in Mississippi.

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@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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Hi Mellany,
Oh dear, sorry to hear about the cough. I’m glad you’re going to see the doctor about it.
You may be interested in following 2 other conversations on medical marijuana happening here on Connect:
– Chronic pain and medical marijuana http://mayocl.in/2c2i9Hx
– CBD http://mayocl.in/2cBCdDn

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