(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

@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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My infectious disease with  dr wilson was on 6th floor east desk.  Not aure if your dr is there or not so probably best to call or stop by an info desk when you get in the building.

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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Okay I added a discussion, hopefully I did it correctly 🙂

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Hi everyone. This is Amy. I wrote a couple weeks ago saying I was starting on Clarithromycin last week, and I started on Rifampin this week. (@katemn…I started on this one because I have to get my baseline vision test this week before I start Ethambutol). So, my first day of Rifampin was yesterday (Monday), I took it at 6:00am. At 1:15 am this morning (Tuesday) I had a pretty bad headache…I managed to get a little more sleep, but I still have the headache this morning. Questions:

1) Has anyone else had a headache as a side effect of Rifampin?
2) If so, did that side effect go away after your body adjusted to the medicine?
3) I just called Walgreens to see if I am okay taking Tylenol or Naproxen. My head usually responds better to Naproxen. They said I was okay taking it short term. Did anyone else have to take either Tylenol or Naproxen for a little while on the 3 drugs?

Thank you for your help, if you can! Amy

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@beatitnow

Hi everyone. This is Amy. I wrote a couple weeks ago saying I was starting on Clarithromycin last week, and I started on Rifampin this week. (@katemn…I started on this one because I have to get my baseline vision test this week before I start Ethambutol). So, my first day of Rifampin was yesterday (Monday), I took it at 6:00am. At 1:15 am this morning (Tuesday) I had a pretty bad headache…I managed to get a little more sleep, but I still have the headache this morning. Questions:

1) Has anyone else had a headache as a side effect of Rifampin?
2) If so, did that side effect go away after your body adjusted to the medicine?
3) I just called Walgreens to see if I am okay taking Tylenol or Naproxen. My head usually responds better to Naproxen. They said I was okay taking it short term. Did anyone else have to take either Tylenol or Naproxen for a little while on the 3 drugs?

Thank you for your help, if you can! Amy

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I did not have headaches that I recall from the meds.  Before and while on the antibotics I  did however take 2 extra strength tylenol almost daily for unexplained fevers.  I now am able to take 1 aleve (Naproxen I believe) for my fevers instead of the tylenol  (and still on the antibotics)  I feel it might help me better with any joint aches if I have them.  So not sure why the pharmacist seemed to indicate they are okay for short term, unless it’s just they are harsh on your stomach.

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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Perfect! Thank you, Jill.

Everyone, see Jill’s post here:
– Tips for first dr visit and tests/appt schedules http://mayocl.in/2moDCnT

Add your tips. 🙂

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@beatitnow

Hi everyone. This is Amy. I wrote a couple weeks ago saying I was starting on Clarithromycin last week, and I started on Rifampin this week. (@katemn…I started on this one because I have to get my baseline vision test this week before I start Ethambutol). So, my first day of Rifampin was yesterday (Monday), I took it at 6:00am. At 1:15 am this morning (Tuesday) I had a pretty bad headache…I managed to get a little more sleep, but I still have the headache this morning. Questions:

1) Has anyone else had a headache as a side effect of Rifampin?
2) If so, did that side effect go away after your body adjusted to the medicine?
3) I just called Walgreens to see if I am okay taking Tylenol or Naproxen. My head usually responds better to Naproxen. They said I was okay taking it short term. Did anyone else have to take either Tylenol or Naproxen for a little while on the 3 drugs?

Thank you for your help, if you can! Amy

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Hi Amy, this is Kathi. Yes, i did get terrible headaches in the beginning, but they’ve mostly subsided after about a month. I’m now on the 3 meds about 2 1/2 months. Nausea is mostly gone now , and i did lose about 12 pounds. I find the worst part now is fatigue. I’m not used to it as i’ve always been so active. My doctor said that may get some better as time goes on. I had a good- sized mass on the right lung two months ago that my doctor suspected was a glob of MAC, but when i got the second CT scan after two months, it was about two thirds gone, so no biopsy is necesary. She and my husband and I are so happy with that news. It sure was a rough ride in the beginning, but my advise to any one is don’t give up. It does get better. I’m living proof! Oh yes, I took tylanol for headaches. It worked pretty well. Kathi(21042)

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Amy, Rifampin is the most difficult of the 3 for me. I did get headaches while taking them and took an Excedrin or 4 ibuprofen to find relief. Typically I took the ibuprofen when some other parts of my body were hurting as well and Excedrin if I only had a headache. I expect the “short term” idea is because of the side effects of taking long term and potential damage to organs. I don’t seem to have as many headaches these days – 3 months into taking the meds. Linda

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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Jen Taylor good for you. I go to Mayo Mn too. I see Dr Aksimets associate and she’s good. There are 5 MAC docs that work w Aksimet. I think they are all on floor 18.There are helpers everywhere (hallways to tell you where you’re going) and it’s professional and caring. They move you quickly along most of the time. My doc gives me plenty of time with her, I bring written questions. Many usually. Don’t be afraid to ask and take notes – you will get great care and the right treatment there. Wishing you the best. Kay Strand 

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@beatitnow

Hi everyone. This is Amy. I wrote a couple weeks ago saying I was starting on Clarithromycin last week, and I started on Rifampin this week. (@katemn…I started on this one because I have to get my baseline vision test this week before I start Ethambutol). So, my first day of Rifampin was yesterday (Monday), I took it at 6:00am. At 1:15 am this morning (Tuesday) I had a pretty bad headache…I managed to get a little more sleep, but I still have the headache this morning. Questions:

1) Has anyone else had a headache as a side effect of Rifampin?
2) If so, did that side effect go away after your body adjusted to the medicine?
3) I just called Walgreens to see if I am okay taking Tylenol or Naproxen. My head usually responds better to Naproxen. They said I was okay taking it short term. Did anyone else have to take either Tylenol or Naproxen for a little while on the 3 drugs?

Thank you for your help, if you can! Amy

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Yes, Aleve is Naproxyn, and anti-inflammatory…I take for my RA…works very well, and not quite as hard on the bod as Tylenol. I also take something for the stomach to keep acid reflux away…

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@katemn

@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your own best advocate .. THEN do NOT believe/think about ‘horror stories’ .. I was on 4-5 antibiotics for 30 months and I CERTAINLY did not feel I ever went through any horror stories! Yes I had some fatigue, loss of appetite , sleep disturbance etc .. but really no biggie .. your body DOES adjust after a time .. it really is NOT a big deal. DON’T make a bigger deal of it than it is! Better to get RID of those nasty critters as I call the mycobacterium than allow them to multiply! So just continue to be happy .. the IF/WHEN the day comes you need to take action .. we are here .. we have ALL been on that journey! We will walk that journey with you! Hugs to you! Katherine

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It’s easy to engage in what’s called catastrophic thinking – in your case, that you’ll never get better – with all we go through…I know better and it still hits me once in a while. You will improve and eventually get your life back. Knowing that will get you through.

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@beatitnow, Amy I am so glad you found this wonderful supportive group of people! Aren’t they GREAT! @jillnc .. Jill, @21042 .. Kathi , @boomerexpert .. Boomer, @lindam272 .. Linda .. thank you SO much for jumping in to help Amy! YOU are what makes this community what it is .. such a thriving caring place that welcomes newcomers on this MAC journey that we are all on .. so NONE of us have to ever feel so alone again! Helping others as we have been helped .. even if we are just ONE step ahead of them! “Playing” it forward! Hugs to all! Katherine

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@katemn

@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your own best advocate .. THEN do NOT believe/think about ‘horror stories’ .. I was on 4-5 antibiotics for 30 months and I CERTAINLY did not feel I ever went through any horror stories! Yes I had some fatigue, loss of appetite , sleep disturbance etc .. but really no biggie .. your body DOES adjust after a time .. it really is NOT a big deal. DON’T make a bigger deal of it than it is! Better to get RID of those nasty critters as I call the mycobacterium than allow them to multiply! So just continue to be happy .. the IF/WHEN the day comes you need to take action .. we are here .. we have ALL been on that journey! We will walk that journey with you! Hugs to you! Katherine

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@gggolfs, GG , STOP! It WILL be ok! Yes I DID go through it all! YES I DID come out on the other side! YES I HAVE been “stable” and off the antibiotics since May 2014! YES I have had a GREAT life since .. traveled all over the world .. had a wonderful life! So STOP and reevaluate all the thinking that is leading you to this point!

YES when you start your med you may have some issues .. some people do .. some people don’t. Each of our bodies are different. THAT is why we have this Connect Forum .. for you to read the back pages .. to educate yourself to your MAC disease .. KNOWING that knowledge is POWER! FEAR is where you are sitting right now .. do NOT let it take you over .. THAT is weakness .. KNOWLEDGE will remove/strengthen you from that fear! DO IT .. take charge of your life and your disease. It is YOUR decision .. either YOU take charge .. or the fear takes charge. Which will it be? I know I am being tough on you .. but I am a grandmother of 10 .. so I tell it like it is!

NOW Girlfriend.. IF you decide to take charge of this process .. I want you to read the back pages of this Forum .. THEN you WILL have POWER .. the Power of Knowledge of your disease .. the power of setting goals of where you want your disease process to go .. you will develop a GAME PLAN .. plus in asking question about anything you do not understand you will gain the support of our wonderfully supportive community of members who have all walked this same journey.

Remember those nasty mycobacterium critters are NOT going to magically disappear .. YOU have to take charge and get rid of them. Develop a game plan and WORK the plan. I know this is a tough time for you .. but we have all walked this walk .. trust us .. we will walk this walk with you. Keep coming back .. we will be here for you. Sending you a hug and lots of positive energy! Katherine

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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Colleen, actually I thought that Mayo Wellness Clinic link that you gave was a WONDERFUL idea for @jentaylor! I hope she takes you up on it! What a wonderful opportunity it is for Mayo patients .. I didn’t know that existed! I am hoping it is free? Katherine

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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@jentaylor, Jen it the 18th floor .. BUT you can ask at any of the Info Desks or the Guides at the elevators.. they are ALL so nice! Katherine

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@katemn

@beatitnow, Amy I am so glad you found this wonderful supportive group of people! Aren’t they GREAT! @jillnc .. Jill, @21042 .. Kathi , @boomerexpert .. Boomer, @lindam272 .. Linda .. thank you SO much for jumping in to help Amy! YOU are what makes this community what it is .. such a thriving caring place that welcomes newcomers on this MAC journey that we are all on .. so NONE of us have to ever feel so alone again! Helping others as we have been helped .. even if we are just ONE step ahead of them! “Playing” it forward! Hugs to all! Katherine

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@jillnc,@boomerexpert,@lindam272, @katemn….yes! thank all of you for your input…all of it is so helpful, and like Kate said, I don’t feel so alone. It was amazing how quickly you all responded….THANK YOU!! My headache did go away about an hour after I typed for help…and I didn’t have to take any drugs…maybe more water helped. 🙂

Also, @boomerexpert, did you get tested for acid reflux? If so, what did they have to do to determine if you have it? I really feel I need to make sure I am not a culprit of that also. Did you know more than 40% of people in their 40’s on up have silent acid reflux? And, I read from an acid reflux expert, Dr Kaufman, that she feels that 90% of pulmonary cases start in the stomach! This is worth getting checked.

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