(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

@akbooks

Kate,
Enjoy reading your blogs. I just found out that I have MAC also. I read some articles about MAC hides in the pipe of the water. Do you take extra precaution with tap water?

Thanks.
Ana

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Ana,
I agree with Liliane, initially I placed a filter on my shower .. but truthfully NO one really knows how we get this .. so just best to exercise .. try to eat properly and live in a positive manner!

UPDATE
Hello Ana,
I was “stable” meaning we will ALWAYS have mycobacterium in our lungs .. BUT no “colonies” increasing at the moment. After 30 months on 4-5 antibiotics I was told I was stable May 2014! While on the antibiotics I religiously rotated 3 different probiotics ..choosing probiotics of the most billions I could find.

In terms of exercise: I have been using a Nordic Track for many years plus my own “form” of yoga and stretching. I used to do weights but as I aged I read that stretching was even more important than weights. So now I just warm up on the Nordic Track using 5# weights in my hands for 5 minutes prior to the exercise .. then try to do 30 minutes including warm up and cool down on the Nordic Track. The Nordic Track is like a ski machine. Some people might have a problem with balancing on it but since I have been doing it for years .. I like it. I’ve always said it would help my balance going into my 80’s .. hopefully! My intent is to exercise 3x per week but truthfully I ALLOW life to intrude .. and usually don’t make that goal .. BUT it IS my goal and it will continue to be my goal!

Ana, because of my responsibility to the Forum .. I am also going to include this in the Forum. I usually do not do private messages. I am currently spending quite a bit of time per day answering emails and LOVE helping people through our shared journey .. in the beginning it is sometimes a scary one .. UNTIL we become educated about our journey. THEN we make peace with that journey .. that is why I do what I do I did NOT have this Forum when I began my journey .. and I felt very alone. I do not want newly diagnosed people to feel as alone as I felt! Sending you positive energy and a Big Hug! Katherine

Liked by Ana

REPLY
@akbooks

Kate,
Enjoy reading your blogs. I just found out that I have MAC also. I read some articles about MAC hides in the pipe of the water. Do you take extra precaution with tap water?

Thanks.
Ana

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Hello All! I just heard the absolutely most heart warming thing on the news today! I think I have mentioned the wonderful person who told me when I was diagnosed the saying “If we all put our troubles in a great big circle .. more than likely .. we would all take back our own troubles!” WELL!! Today .. I was AGAIN .. reminded that CERTAINLY I WOULD take my own troubles back from that circles .. in a MOST heartwarming manner!

Please take a moment to view this WONDERFUL video .. it will just MAKE YOUR DAY .. WITH A SMILE ON YOUR FACE!!

Backyard Ball Field in Wisconsin Teaches Kids More than Baseball
http://kstp.com/news/hammond-wisconsin-backyard-tcp-baseball-field-feyereisen-family/4147298/

Sending you all a hug .. and realizing we all have our own journeys to travel .. and MANY have much tougher ones!

Liked by liliane

REPLY

I was just diagnosed today, 5.24.16, with MAC. Your blog is the first thing I’ve read on the internet and wanted to join. I was sooo relieved to hear I have something treatable and curable at the Dr office today I about started to cry. I’ve had high fevers at night for over a year now. Weight loss for about a year now, coughing for over a year, shortness of breath at times, just can’t believe how many of my symptoms the Dr rattled off that I have. The way I was diagnosed is strange too. The beginning of April I went to my regular Dr and said there is something wrong with me we need to get to the bottom of it. I also had hand/wrist, upper arm pain. Anyway, I was tested and sent to an RA Dr and a hematologist. My regular Dr found I have Hashimoto’s thyroiditis and the other two did some blood work and found out I have sjogren’s syndrome. The hematologist did a CT scan to rule out lymphoma, but they saw things in my lungs so she sent me to an infectious disease Dr who found the MAC. He is going to put me on 3 antibotics everyday he said until I get a clear test, then it will be 12 months after that that I will be able to stop the meds. He warned me that one can cause urine, saliva and tears to turn orange, some nausa, and could effect the liver so they’d keep an eye on that. He said the other two are tolerated pretty well. I’ve been reading on here about taking vitamin D. I called my reg Dr to see if she thought there were any issues with me taking that daily, so waiting to hear. I’m hoping and praying I tolerate the antibotics well and get back closer to the way I used to be. I’m curious though and forgot to ask the ID Dr, once ‘cured’ is this something that can be gotten again? or is it like a virius where once you have it you build up immunities against it? Also I see a lot of people saying exercise is a good, which I don’t do. I have so many questions, but I don’t think of them all at once and I’m just on overdrive right now thinking I’ll get rid of my fevers hopefully (they’d gotten as high as 103.5 if I didn’t catch them and take tylenol). I look forward to learning more about this and reading more of your blog. Thank you for starting it!

REPLY
@jillnc

I was just diagnosed today, 5.24.16, with MAC. Your blog is the first thing I’ve read on the internet and wanted to join. I was sooo relieved to hear I have something treatable and curable at the Dr office today I about started to cry. I’ve had high fevers at night for over a year now. Weight loss for about a year now, coughing for over a year, shortness of breath at times, just can’t believe how many of my symptoms the Dr rattled off that I have. The way I was diagnosed is strange too. The beginning of April I went to my regular Dr and said there is something wrong with me we need to get to the bottom of it. I also had hand/wrist, upper arm pain. Anyway, I was tested and sent to an RA Dr and a hematologist. My regular Dr found I have Hashimoto’s thyroiditis and the other two did some blood work and found out I have sjogren’s syndrome. The hematologist did a CT scan to rule out lymphoma, but they saw things in my lungs so she sent me to an infectious disease Dr who found the MAC. He is going to put me on 3 antibotics everyday he said until I get a clear test, then it will be 12 months after that that I will be able to stop the meds. He warned me that one can cause urine, saliva and tears to turn orange, some nausa, and could effect the liver so they’d keep an eye on that. He said the other two are tolerated pretty well. I’ve been reading on here about taking vitamin D. I called my reg Dr to see if she thought there were any issues with me taking that daily, so waiting to hear. I’m hoping and praying I tolerate the antibotics well and get back closer to the way I used to be. I’m curious though and forgot to ask the ID Dr, once ‘cured’ is this something that can be gotten again? or is it like a virius where once you have it you build up immunities against it? Also I see a lot of people saying exercise is a good, which I don’t do. I have so many questions, but I don’t think of them all at once and I’m just on overdrive right now thinking I’ll get rid of my fevers hopefully (they’d gotten as high as 103.5 if I didn’t catch them and take tylenol). I look forward to learning more about this and reading more of your blog. Thank you for starting it!

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@jillnc
Hello Jill?, I am SOOOO glad you found our Forum!! When I was first diagnosed in 2007 I felt I had absolutely NO WHERE to turn and it was SO scary! That is why I wrote that first post in 2011 .. I just NEVER wanted anyone to feel as alone as I had felt when I was diagnosed! Trust me .. here on this Forum .. you will NEVER be alone again! We are ALL on this journey together! I am sending you a Big Hug right now!

Now down to business! Knowledge is Power! Start reading all the posts back to page 1 .. you will learn SO much about your disease! As you read all the posts .. start a list of questions! One list for your doctors .. maybe some questions we can help you with right away. Remember NO ONE cares about your body as much as YOU do .. YOU are responsible for it! DO your “Due Diligence!” Educate yourself! Remember the saying “Put your energy into what you can control .. and let go of what you can’t control!” You CAN control educating yourself .. getting as much exercise as you can to keep your body and your lungs as healthy as possible .. eat healthy .. and get enough sleep. These things you CAN control. What you CANNOT control is where this disease is going to take you .. let that go.

You will read from the posts .. No, MAI/MAC cannot be “cured” .. it can only be “stabilized” .. that is why it is important to keep our bodies as healthy as possible .. but there is no guarantee there will not be a recurrence.

Again, we are all sending you positive energy and remember .. we ARE all on this shared journey!

REPLY
@jillnc

I was just diagnosed today, 5.24.16, with MAC. Your blog is the first thing I’ve read on the internet and wanted to join. I was sooo relieved to hear I have something treatable and curable at the Dr office today I about started to cry. I’ve had high fevers at night for over a year now. Weight loss for about a year now, coughing for over a year, shortness of breath at times, just can’t believe how many of my symptoms the Dr rattled off that I have. The way I was diagnosed is strange too. The beginning of April I went to my regular Dr and said there is something wrong with me we need to get to the bottom of it. I also had hand/wrist, upper arm pain. Anyway, I was tested and sent to an RA Dr and a hematologist. My regular Dr found I have Hashimoto’s thyroiditis and the other two did some blood work and found out I have sjogren’s syndrome. The hematologist did a CT scan to rule out lymphoma, but they saw things in my lungs so she sent me to an infectious disease Dr who found the MAC. He is going to put me on 3 antibotics everyday he said until I get a clear test, then it will be 12 months after that that I will be able to stop the meds. He warned me that one can cause urine, saliva and tears to turn orange, some nausa, and could effect the liver so they’d keep an eye on that. He said the other two are tolerated pretty well. I’ve been reading on here about taking vitamin D. I called my reg Dr to see if she thought there were any issues with me taking that daily, so waiting to hear. I’m hoping and praying I tolerate the antibotics well and get back closer to the way I used to be. I’m curious though and forgot to ask the ID Dr, once ‘cured’ is this something that can be gotten again? or is it like a virius where once you have it you build up immunities against it? Also I see a lot of people saying exercise is a good, which I don’t do. I have so many questions, but I don’t think of them all at once and I’m just on overdrive right now thinking I’ll get rid of my fevers hopefully (they’d gotten as high as 103.5 if I didn’t catch them and take tylenol). I look forward to learning more about this and reading more of your blog. Thank you for starting it!

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I am glad you found this blog. It is reassuring to be able to share symptoms, difficulties and help each other with solutions. I had difficulties initially with the antibiotics, lots of acidity, regurgitation. I found that dividing the dose between two meals helped a lot. Also, be sure to take a good quality probiotic on a daily basis. Ask your pharmacist what he recommends. I take one that is used to avoid colitis, it has a much higher microorganism count and a variety of species of good bacteria. The best kind is kept refrigerated by the pharmacist. And yes…having orange urine is startling indeed.
Best of luck to you. Sounds like you are in good hands.

REPLY
@jillnc

I was just diagnosed today, 5.24.16, with MAC. Your blog is the first thing I’ve read on the internet and wanted to join. I was sooo relieved to hear I have something treatable and curable at the Dr office today I about started to cry. I’ve had high fevers at night for over a year now. Weight loss for about a year now, coughing for over a year, shortness of breath at times, just can’t believe how many of my symptoms the Dr rattled off that I have. The way I was diagnosed is strange too. The beginning of April I went to my regular Dr and said there is something wrong with me we need to get to the bottom of it. I also had hand/wrist, upper arm pain. Anyway, I was tested and sent to an RA Dr and a hematologist. My regular Dr found I have Hashimoto’s thyroiditis and the other two did some blood work and found out I have sjogren’s syndrome. The hematologist did a CT scan to rule out lymphoma, but they saw things in my lungs so she sent me to an infectious disease Dr who found the MAC. He is going to put me on 3 antibotics everyday he said until I get a clear test, then it will be 12 months after that that I will be able to stop the meds. He warned me that one can cause urine, saliva and tears to turn orange, some nausa, and could effect the liver so they’d keep an eye on that. He said the other two are tolerated pretty well. I’ve been reading on here about taking vitamin D. I called my reg Dr to see if she thought there were any issues with me taking that daily, so waiting to hear. I’m hoping and praying I tolerate the antibotics well and get back closer to the way I used to be. I’m curious though and forgot to ask the ID Dr, once ‘cured’ is this something that can be gotten again? or is it like a virius where once you have it you build up immunities against it? Also I see a lot of people saying exercise is a good, which I don’t do. I have so many questions, but I don’t think of them all at once and I’m just on overdrive right now thinking I’ll get rid of my fevers hopefully (they’d gotten as high as 103.5 if I didn’t catch them and take tylenol). I look forward to learning more about this and reading more of your blog. Thank you for starting it!

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Jill, you are not alone. We all stand with you. Many times I felt that the friends here know better what I am going thru than my own family. I hope you will draw strength from here. I am so thankful that we have person like Kate who has gone thru the process and is holding our hands by sharing her experience with us.

Kate, I am doing kefir everyday. Is it enough? Do I need to take probiotics pills also? Why you rotated the probiotics?
FYI, I am exercising everyday now. Thanks for sharing that piece of information.
Ana

REPLY
@jillnc

I was just diagnosed today, 5.24.16, with MAC. Your blog is the first thing I’ve read on the internet and wanted to join. I was sooo relieved to hear I have something treatable and curable at the Dr office today I about started to cry. I’ve had high fevers at night for over a year now. Weight loss for about a year now, coughing for over a year, shortness of breath at times, just can’t believe how many of my symptoms the Dr rattled off that I have. The way I was diagnosed is strange too. The beginning of April I went to my regular Dr and said there is something wrong with me we need to get to the bottom of it. I also had hand/wrist, upper arm pain. Anyway, I was tested and sent to an RA Dr and a hematologist. My regular Dr found I have Hashimoto’s thyroiditis and the other two did some blood work and found out I have sjogren’s syndrome. The hematologist did a CT scan to rule out lymphoma, but they saw things in my lungs so she sent me to an infectious disease Dr who found the MAC. He is going to put me on 3 antibotics everyday he said until I get a clear test, then it will be 12 months after that that I will be able to stop the meds. He warned me that one can cause urine, saliva and tears to turn orange, some nausa, and could effect the liver so they’d keep an eye on that. He said the other two are tolerated pretty well. I’ve been reading on here about taking vitamin D. I called my reg Dr to see if she thought there were any issues with me taking that daily, so waiting to hear. I’m hoping and praying I tolerate the antibotics well and get back closer to the way I used to be. I’m curious though and forgot to ask the ID Dr, once ‘cured’ is this something that can be gotten again? or is it like a virius where once you have it you build up immunities against it? Also I see a lot of people saying exercise is a good, which I don’t do. I have so many questions, but I don’t think of them all at once and I’m just on overdrive right now thinking I’ll get rid of my fevers hopefully (they’d gotten as high as 103.5 if I didn’t catch them and take tylenol). I look forward to learning more about this and reading more of your blog. Thank you for starting it!

Jump to this post

Thank you for your support everyone. I did ask the pharmacist which probiotic they recommended and it’s florastor, so took that today as today I started the antibiotics. Took the R one in the morning after breakfast and that seemed to go okay. Urine was definitely pumpkin orange LOL i took the Arizmothisyn (I know I’m not spelling it correctly…its pink), and the E one after dinner. Feeling nausea (or hungry can’t tell) with these so I took a florastor to see if it would help and didn’t notice any difference yet. So I ate a small baggie of dry cheerios as that has helped with a nausea feeling before, felt better while I was eating, but now don’t feel good again. So tomorrow I was thinking of separating the two at dinner time and taking the pink one at lunch and the E one after dinner as I think it’s that one causing the nausea. I also don’t know if I need to give my body time to get used to the meds or if I should call the Dr back tomorrow after only having taken them 1 day, but I know I can not put up with this nausea for over the next year or however long. I also seemed to get really hot this afternoon and this evening, so I took 2 tylenol and put on lighter weight clothig and that’s seemed to have helped a little. Thanks for the support ladies…it does help.

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@akbooks Ana, I can only speak for myself .. but after Dr. Aksamit recommended immediately upon starting me on the antibiotics that I start a probiotic .. I being ever the researcher found no one probiotic has all the various strains of probiotic. (just one source of info is: http://www.drdavidwilliams.com/probiotic-strains/ )

So that is why I decided to rotate 3 different brands of probiotics .. and to seek out the probiotics with the MOST billions. And yes .. my understanding is that the refrigerated brands are the very best but after “fooling” with them for a few months I just went with the unrefrigerated ones and I was ok.

My only reason for that was the complexity of my medication regime .. I purchased several fishing tackle boxes with 18 squares each .. parceled out my medication/probiotics/vitamins ALL at one time!! That way I only had to open those darn bottle once every 90 days!! All my prescriptions are written for 90 days .. one co pay .. one hassle to set up my meds & vitamins. One hassle .. then no worries! Worked for me!

Hope this info helps you .. peace on our shared journey!

REPLY
@katemn

@akbooks Ana, I can only speak for myself .. but after Dr. Aksamit recommended immediately upon starting me on the antibiotics that I start a probiotic .. I being ever the researcher found no one probiotic has all the various strains of probiotic. (just one source of info is: http://www.drdavidwilliams.com/probiotic-strains/ )

So that is why I decided to rotate 3 different brands of probiotics .. and to seek out the probiotics with the MOST billions. And yes .. my understanding is that the refrigerated brands are the very best but after “fooling” with them for a few months I just went with the unrefrigerated ones and I was ok.

My only reason for that was the complexity of my medication regime .. I purchased several fishing tackle boxes with 18 squares each .. parceled out my medication/probiotics/vitamins ALL at one time!! That way I only had to open those darn bottle once every 90 days!! All my prescriptions are written for 90 days .. one co pay .. one hassle to set up my meds & vitamins. One hassle .. then no worries! Worked for me!

Hope this info helps you .. peace on our shared journey!

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Hi I am new to this site. I don’t know if anyone else has pulmonary microbacterium chelonae? I was diagnosed at 42. It’s been six months that I have been on three different antibiotics ocean. Was feeling better but had so many side effects from the tobramycin picc line that I had to stop. Started new antibiotics and started feeling the symptoms again. Has anyone started feeling worse on the meds?

REPLY
@katemn

@akbooks Ana, I can only speak for myself .. but after Dr. Aksamit recommended immediately upon starting me on the antibiotics that I start a probiotic .. I being ever the researcher found no one probiotic has all the various strains of probiotic. (just one source of info is: http://www.drdavidwilliams.com/probiotic-strains/ )

So that is why I decided to rotate 3 different brands of probiotics .. and to seek out the probiotics with the MOST billions. And yes .. my understanding is that the refrigerated brands are the very best but after “fooling” with them for a few months I just went with the unrefrigerated ones and I was ok.

My only reason for that was the complexity of my medication regime .. I purchased several fishing tackle boxes with 18 squares each .. parceled out my medication/probiotics/vitamins ALL at one time!! That way I only had to open those darn bottle once every 90 days!! All my prescriptions are written for 90 days .. one co pay .. one hassle to set up my meds & vitamins. One hassle .. then no worries! Worked for me!

Hope this info helps you .. peace on our shared journey!

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@carroll Hello Carroll and Welcome! So glad you found our Forum! I am hoping someone pops in that does have pulmonary microbacterium chelonae. Myself I was on 4-5 antibiotics for thirty months for two different strains of mycobacterium .. have now been stable since May 2014.

Personally am SO glad you are off that Pic Line .. I once googled “Pic Line Infection Risks” and was pretty turned off. My guess is that this antibiotic route will be a good one .. hopefully as your body adjusts the side affects will wear off.

My suggestion to you would be to read through the previous seven pages of posts .. you might well pick up some ideas about timing of meds that might help you. You will find that each of our bodies is different .. so you may have to experiment a bit to find out just what works best for you. Remember .. we must take good care of our bodies .. so it can take care of us. Our bodies are our friends .. we are given just one body in this lifetime .. cherish it! Keep us posted on how you are doing .. this is a very supportive Forum .. we are all on a shared journey! I am sending you a Big Hug and positive thoughts! Katherine

REPLY
@katemn

@akbooks Ana, I can only speak for myself .. but after Dr. Aksamit recommended immediately upon starting me on the antibiotics that I start a probiotic .. I being ever the researcher found no one probiotic has all the various strains of probiotic. (just one source of info is: http://www.drdavidwilliams.com/probiotic-strains/ )

So that is why I decided to rotate 3 different brands of probiotics .. and to seek out the probiotics with the MOST billions. And yes .. my understanding is that the refrigerated brands are the very best but after “fooling” with them for a few months I just went with the unrefrigerated ones and I was ok.

My only reason for that was the complexity of my medication regime .. I purchased several fishing tackle boxes with 18 squares each .. parceled out my medication/probiotics/vitamins ALL at one time!! That way I only had to open those darn bottle once every 90 days!! All my prescriptions are written for 90 days .. one co pay .. one hassle to set up my meds & vitamins. One hassle .. then no worries! Worked for me!

Hope this info helps you .. peace on our shared journey!

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Hello Ana, I just came across a GREAT Probiotic! It is: NOW PROBIOTIC 10-50 BILLION. The best price I have found for it is at Amazon.com
http://www.amazon.com/NOW-Foods-Probiotic-10-Billion-Vcaps/dp/B0031RJXCK/ref=sr_1_2_a_it?ie=UTF8&qid=1465156239&sr=8-2&keywords=probiotics+50+billion

It has: 50 Billion and Healthy Intestinal Flora*, KEEP REFRIGERATED TO MAINTAIN POTENCY
•10 Probiotic Strains,
•Dairy, Wheat & Gluten Free – Vegetarian/Vegan Formula

DARN! .. as I researched this for you .. I just realized I have 3 bottles in my drawer .. I have NOT refrigerated them!! Good thing I am letting you know about this .. will refrigerate immediately! Indeed I have read in the past that the best probiotics DO need to be refrigerated.

Just read something interesting on probiotics .. thought I’d share:
http://www.nowfoods.com/Quality/Quality-Notes/088797.htm

Hope this helps you! Katherrine

REPLY

Katherine,
I’m not sure how this works so I hope this will get to you. I have read many of the posts here and I am so incredibly blessed compared to pretty much all of you. I’m 60 yrs old. I was just diagnosed with mild bronchiectasis. But, I think I’ve had it for many years. They found it because I had chest pain so they did an xray – that looked a little off so they said might want to follow up with a ct scan in 6 weeks. The chest pain went away so my Dr. said I didn’t really have to have the CT scan, but since I was a former smoker (25 years ago) I’m always a little nervous so I said do it. That’s when they diagnosed me with mild bronchiectasis in two lobes of my lungs and MAC/MAI infection. I have no symptoms other than sometimes dry/sometimes mucousy cough that I’ve had for many years. Some mild fatigue occasionally and a little trouble keeping weight on although that may be due to some depression due to my husbands death a few years ago. So, I’m really doing great all things considered. My pulmonary Dr. who is a fellow (not crazy about that) and her attending at Duke are recommending a followup CTscan at 6 months to make sure the infection hasn’t progressed as that could make my bronchiectasis worse among other things. I’ve opted to have a bronchoscopy to get a culture even though they say they know it’s MAC and the culture could always come back negative from getting a bad sample. They’ve advised against starting treatment until I need to – until or if I start having issues since the treatment can be so awful. That makes sense to me. I guess I’m wondering if you think that sounds reasonable also? I know you’re not a Dr. but I’m a great researcher and there’s no information out there on how to treat patients that look and feel pretty darn healthy. I just want to be proactive. If I were to suddenly get worse, I think I would go up to the Mayo to get a second opinion and see your Dr. I’m actually a MN girl – my whole family is up there so it would just be a trip home to me! Everything I’m getting on the internet stresses the need for exercise, eating right, rest. My Dr’s didn’t even bring that up. Also, I read-on here I think- that some people never have issues with this? Wasn’t there a 90 yr old woman living with MAC for 20 years? I don’t know how many people out there are like that. Thanks, Katherine. You are an Angel for supporting everyone in this. You’ve definitely earned your wings! 🙂

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I was diagnose w/MAC 2months ago and was terrified. I search and trying to find info.,like you I get terrified. Sometimes I avoid looking into it, trying to ignore the decease. I didn’t want to take the treatment b/c of the side effect, it scares me get so nervous that I start shaking. Now I’m on meds for a week and the side effect I’m trying to tolerate it. Thanks for you advise.

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@Paula_MAC2007

Nick, oh my, you have my sympathies!!! Like Shelby, I can’t imagine having Cancer and MAI/MAC!! I can only recommend that you follow your doctor’s orders — and exercise (ie walk) as much as you can to get your lungs working at ‘full’ capacity (for you) and get plenty of rest/sleep. I’m on all 3 meds – for 3 years I took them every day. Boy, the first year I was sick with MAC and then the drugs made me quite nauseous and tired. I worked 10-11 hr days. But I found going to bed early, taking all the meds at once, and ‘powering down’ mentally was more tolerable than taking them in the morning. After 1 year my doctor moved to Florida (near you!), and I got the ‘expert’ in MAC at the teaching hospital where I go. Got feeling so well, that after several years I went off the drugs – and after 3 months began getting sick again. He put me back on the meds but lowered the ethambutol (was on 1,000 MG a day), and instead of taking the meds every day, I take them every other day. That’s been 3-4 years and I am doing just great! Have had lung biopsies and lung washes and the MAC appears not to be growing.

Yep, the side effects do go away over time. But with you being on Chemo, it may be hard to know which is causing tiredness or nausea. You’ve certainly got your hands full — please keep us periodically updated on how you are doing. We’re all in the ‘club’ together! And CONGRATULATIONS on retiring!

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Paula, thanks for the info. I was thankful to see that I’m not alone with this MAC. I’m having hard time sleeping at night and on top of that I have acid reflux and high cholesterol. Its so difficult what med I can take w/ the 3med that I’m on now. Thank you all so much for your post.

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@cila

I was diagnose w/MAC 2months ago and was terrified. I search and trying to find info.,like you I get terrified. Sometimes I avoid looking into it, trying to ignore the decease. I didn’t want to take the treatment b/c of the side effect, it scares me get so nervous that I start shaking. Now I’m on meds for a week and the side effect I’m trying to tolerate it. Thanks for you advise.

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Cila, I’m so sorry you are so nervous. I know it is so overwhelming when you read everything on the internet. It really scared me at first. I know I’m one of the lucky ones since I don’t need treatment. I really feel for you. I think this message board will be a godsend for you. Everyone sounds so helpful and supportive. You’re not alone in this. Any one of them will answer questions you have about medicines or how to deal with side effects or which Drs. to see. Just reading some of the older posts can actually help. While some people struggle, many others do well or find ways to cope and they learn from each other. Ask questions. Someone is sure to have an answer or will point you in the direction so you can get the answer.
Hugs,
Janet

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