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

@katemn

Hello Rhudesb .. I just LOVE Janet’s attitude and approach of Plan A and Plan B .. what a GREAT idea! Now Ruhdesb .. didn’t I tell you what wonderful and supportive people we have on this Forum? Just stick with us and you will be just fine .. I know you will make the right decision for YOU after you have educated yourself to your options. Sending you a hug .. because I know this is a tough time right now! Katherine

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I think for now my Plan A will be the course of action. Continue as normal
and wait for the CAT in Jan. I’m already on drugs for RA, Dry Eye and HB.
Perhaps my condition is not as severe as many I have read about (52% lung
capacity). Just can’t opt for nausea and vomiting and be bedridden. Thanks
for the support keep spreading the love.

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Hello Ruhdesb, whatever your decision .. know that we are here for you. Return any time .. just drop a line .. we’re not leaving you! Sending you a hug! Katherine

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Hello @ruhdesb and @justjanet,

When I was diagnosed about 9 years ago, there was no blog like this. My Internal Med doc didn’t know about NTM/MAC and my CT scans looked like I had lung cancer. I got a very good pulmonologist who was familiar with NTM/MAC. He did not elaborate about side effects, so I didn’t know to be scared. But I was quite ill at the time, with cavitary MAC and lesions. He did say some of his patients on the 3 drugs had to find their own way when taking the drugs. And he asked me for a 6 month commitment on the drugs. I saw him monthly for 6 months then every 3 months until he moved to Florida to practice. I then got a fabulous pulmonologist in the same teaching hospital, so familiar with NTM & MAC.

Bottom line is this . . . if you don’t know to be scared about the 3 drugs, you most probably won’t be. Concerned about them — yes; scared about them — no.
And YOU are in control here, it’s YOUR body. I negotiate with my current pulmonologist of 7 years. Thru the years, he’s given me samples of inhalers to no effect, and we talk about when to do a bronchoscopy or lung lavage and the reason for it, when to try to go off the drugs, when to do breathing treatments, etc. I think I may be an unusual person on this blog . . . I have been on the drugs since 2007 – except for a 6 month stint – and NTM/MAC has always been there. But I feel fabulous and have no complaints. My advice — find the best doc you can, TALK with him/her and keep them informed, and negotiate your treatment! And enjoy life!

Paula

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@Paula_MAC2007

Hello @ruhdesb and @justjanet,

When I was diagnosed about 9 years ago, there was no blog like this. My Internal Med doc didn’t know about NTM/MAC and my CT scans looked like I had lung cancer. I got a very good pulmonologist who was familiar with NTM/MAC. He did not elaborate about side effects, so I didn’t know to be scared. But I was quite ill at the time, with cavitary MAC and lesions. He did say some of his patients on the 3 drugs had to find their own way when taking the drugs. And he asked me for a 6 month commitment on the drugs. I saw him monthly for 6 months then every 3 months until he moved to Florida to practice. I then got a fabulous pulmonologist in the same teaching hospital, so familiar with NTM & MAC.

Bottom line is this . . . if you don’t know to be scared about the 3 drugs, you most probably won’t be. Concerned about them — yes; scared about them — no.
And YOU are in control here, it’s YOUR body. I negotiate with my current pulmonologist of 7 years. Thru the years, he’s given me samples of inhalers to no effect, and we talk about when to do a bronchoscopy or lung lavage and the reason for it, when to try to go off the drugs, when to do breathing treatments, etc. I think I may be an unusual person on this blog . . . I have been on the drugs since 2007 – except for a 6 month stint – and NTM/MAC has always been there. But I feel fabulous and have no complaints. My advice — find the best doc you can, TALK with him/her and keep them informed, and negotiate your treatment! And enjoy life!

Paula

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Thanks, I appreciate your input. I have probably lost faith having searched
for answers to my reoccurring pneumonias, coughing, heavy chestedness, RA
for over 30 years and having all kinds of diagnoses (Legionaires, HIV,
allergies, asthma, bronchiectasis etc. and apparatuses. If I hadn’t
contracted pneumonia while hospitalized with neck surgery, I might still be
searching. Putting a name to the problem eases some concern, now I must
take my steps toward what to do with that name attached to this body. I’ll
try MAC truck first! Plow my way through.

Liked by Paula_MAC-2007

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@Paula_MAC2007

Hello @ruhdesb and @justjanet,

When I was diagnosed about 9 years ago, there was no blog like this. My Internal Med doc didn’t know about NTM/MAC and my CT scans looked like I had lung cancer. I got a very good pulmonologist who was familiar with NTM/MAC. He did not elaborate about side effects, so I didn’t know to be scared. But I was quite ill at the time, with cavitary MAC and lesions. He did say some of his patients on the 3 drugs had to find their own way when taking the drugs. And he asked me for a 6 month commitment on the drugs. I saw him monthly for 6 months then every 3 months until he moved to Florida to practice. I then got a fabulous pulmonologist in the same teaching hospital, so familiar with NTM & MAC.

Bottom line is this . . . if you don’t know to be scared about the 3 drugs, you most probably won’t be. Concerned about them — yes; scared about them — no.
And YOU are in control here, it’s YOUR body. I negotiate with my current pulmonologist of 7 years. Thru the years, he’s given me samples of inhalers to no effect, and we talk about when to do a bronchoscopy or lung lavage and the reason for it, when to try to go off the drugs, when to do breathing treatments, etc. I think I may be an unusual person on this blog . . . I have been on the drugs since 2007 – except for a 6 month stint – and NTM/MAC has always been there. But I feel fabulous and have no complaints. My advice — find the best doc you can, TALK with him/her and keep them informed, and negotiate your treatment! And enjoy life!

Paula

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Paula, really good insights! Thank you! So true .. you don’t know what you don’t know .. so you just plow through! I will say on the inhalers .. I use both Qvar and Atrovent .. 2 puffs each twice a day. For my body they seem to be kind of cleansers of the lungs/bronchial tubes. They really help me cough up some pretty ugly stuff! I have tried the mechanical items but for me they didn’t seem to bring anything up .. but the inhalers do. Interesting how each person’s body is so different! We are each just beautiful little snow flakes aren’t we?! 🙂 Hugs to all! Katherine

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@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

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Jill, I have been on the 3 diff. antiobiotics for 3.5 months with some side effects – mild thank goodness ie stomach rumbling and some mild diarrhoea. Recent CXR showed infection is still progressing, but I feel much better and have stopped the terrible coughing which was the worst symptom. Biopsy and 3 x CT scans all confirm. Good luck with you treatment. JO

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@sophie1019

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

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I was just diagnosed. I am scared. I went to id doctor, and she js waiting ti figure iut what anti iotica ti give me. Ince she vet another report to come back. I had a bronchocopy done in November 2016. I was tild i had mrsa on my lungs and trachitis.
Then i ended yp in hispital fir 2 weeks at christmas wuth pnemonia.
It was o. decemer 29th i got a phone call telli g me I have Mac. I am nervouse because who know hiw long Inreally have this and i still am not on any meds. Who know what damage is going on my lungs.

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@sophie1019

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

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Hello @dianelobosco, welcome to Connect. I can sense the uncertainty and anxiety that you must be feeling from your new diagnosis. We are glad that you found Mayo Clinic Connect, as you have found a group that has many members who support one-another.

I encourage you to also check out the large ongoing discussion about MAC, found here:

– MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI), http://mayocl.in/2cwX36M.

This is a discussion that was started by one of our active and supportive mentors, @katemn. You will meet many other welcoming members facing the same diagnosis as yourself. @dianelobosco, what sort of treatments have been suggested by your physician? You said you received the diagnosis on December 29th, has there been any communication with your medical provider since?

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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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@sophie1019

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

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@dianelobosco .. Hello .. may I call you Diane? SO glad you found our Forum! It sounds like you are really going through a tough time! A lot to go through! PLEASE do not be so afraid! We ALL have been down this road .. we will be with you hand in hand now .. through out this journey of yours .. our SHARED journey .. we have ALL been down this SAME road as you have now started. We ALL were scared like you are right now.

BUT you will find IF as you have time that you read through the past pages of the Forum .. you will see that EACH of us has had a different journey through the treatment and disease .. BUT we are coming .. or HAVE come out on the other side. Please do keep coming back .. ask any questions you have .. we will be here for you .. you will find really kind supportive people here who will support you through this journey. Sending you a Big Hug in this tough time. Katherine

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@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

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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 antibx daily. SIGH

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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 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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@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

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

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