(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

@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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@128128terry11t Ba ha ha ha, Terry! Just had a funny mental picture of you in your knee pads! I think you will find the kitchen sink so much easier. By the way, wasn’t making fun of you, I am just being silly. – Terri

Linda, I do that too, but when I returned to a folder I had for some time; it was totally empty!!!!

@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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If we can’t laugh, we’re in big trouble. Just add a Cambridge mask to the knee pads image! Terry

Ha! I bet your were a vision of one hot mama!

Hello all. My mother was just diagnosed with MAC/MAI. She’s been so down in the dumps. Are there any tips/useful information that you can share that you wish you had known when you were starting out? She started the 3 antibiotics today – when do most of you take these? Morning? Afternoon? Evening? With meals? Between meals? She is dealing with horrible GERD – can you take antacids or reflux meds along with the antibiotics? Any info that you can provide will be so helpful and very much appreciated. Thank you!!

@laural856

Hello all. My mother was just diagnosed with MAC/MAI. She’s been so down in the dumps. Are there any tips/useful information that you can share that you wish you had known when you were starting out? She started the 3 antibiotics today – when do most of you take these? Morning? Afternoon? Evening? With meals? Between meals? She is dealing with horrible GERD – can you take antacids or reflux meds along with the antibiotics? Any info that you can provide will be so helpful and very much appreciated. Thank you!!

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Hi, Laura, Welcome! You are in the right place for answers to your questions. I know it appears daunting, but the easiest way to get the information you need is by reading the previous pages of the forum. It is a wealth of information. I read it over a period of time and came away with more knowledge than my infectious disease doctor.
Taking the meds works differently for different people. It took me about 5 times changing the schedule of my meds before I found one that worked for me.
Here are some notes from our mentor, Katherine, who is on sabbatical:
ANTIBIOTIC ..MY PERSONAL EXPERIENCE WITH SCHEDULING ANTIBIOTICS
These would be my suggestions to you based on my experience and my research:
**Make SURE you request a “test for antibiotic sensitivity after your sputum culture showed MAC” .. so your doctor KNOWS exactly WHICH antibiotic will be effective for YOUR particular mycobacterium!!

From a Member: Had side effects. Then my pulmonologist took me off all meds to make sure nothing else was going on. My pulmonologist suggested that I re-start the meds one at a time. I went on first one for two weeks (pulmonologist suggested that it be for two weeks); then a second for two weeks; and then a third for two weeks. I also decided that it was time to go on an anti-anxiety pill to help with the “nervousness” and all that it entails. Went to a psychiatrist and am on Lorazepam (anywhere from .5 to 1 mg). That is extremely helpful. No shame in that at all; proud of myself for admitting that I needed that kind of assistance. Wishing you better days.

**With my history to drug sensitivity .. I requested that I start ONE DRUG at a time for ONE WEEK .. or at LEAST 4 days before adding a second drug .. so I could tell EXACTLY which/what drug was causing ANY potential side effect and I could isolate it .. hopefully watch for a side effect dwindle etc. THEN introduce a SECOND DRUG. Frankly WE are in the driver’s seat in our own lives .. our own bodies. Take charge and request that type of schedule if you want it!

TRUST ME! The absolute WORST thing you can do is begin to be stressed about this process .. just go with the flow .. “trust the process” .. put your energy into what you can control .. and let go of what you CANNOT control! You can control gathering the best information possible from all of us .. BUT knowing each of us have different bodies .. different body chemistries .. ways our bodies will react. YOU will just have to go with the flow .. see how YOUR body reacts .. TRUST your body .. ADJUST to how your body is reacting .. TRUST your body .. WORK with your body. Know that your body is your friend .. know that if you take care of your body .. your body can take care of you in the future! So for now .. do NOT try to control the outcome .. the outcome will take care of itself! Trust the process .. trust yourself .. trust us .. we have been through it and have come out on the out side .. you will also. As member @irene5 Irene, said ” You know your body best. You will need to listen to it and it’s infinite wisdom.”

**Below is what worked for me .. but keep in mind .. Basically everyone experiments with what med schedule works best for them:
1. PROBIOTIC: take probiotic half hour before breakfast on an empty stomach (when on meds I also took a 2nd probiotic in the evening on an empty stomach)
2. 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.) FOR ME Rifampin caused sleep disturbance so I tried to take it FIRST THING in the morning!
3. 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.

ANTIBIOTICS .. SCHEDULING ..DIFFERENT MEMBERS
TIP: REQUEST 90 DAY PRESCRIPTIONS FOR ALL YOUR ANTIBIOTICS .. THEN YOU HAVE JUST ONE CO PAY.

BEST
Here from one of our members is what I think is REALLY good advice on starting the antibiotics .. hope it helps you! Keep in mind .. YOU may NOT feel “lousy” the first month .. each of our bodies are DIFFERENT .. each of our bodies will react differently .. but the advice I just excellent!

SCHEDULING ANTIBIOTICS From Member @pamelasc1, I began the 3 pill regimen. I did feel very lousy the first month but was told to hang in there, that it gets better each week- and it did! I will tell you how I take my pills, as timing can help, as can taking other supplements. I take them between 9 and 10 PM, just before going to bed. I take with a lot of water. I try to put a minimum of 2 hours between eating dinner and taking the pills. Every day I take a probiotic to help the gut – the antibiotics wreak havoc with the gut. This can help with nausea – I take my probiotic with breakfast or lunch – do not take it late in the day. I use Ultra Jarro-Dophilus – 50 billion per capsule – will find in the frig at any health food store – I open up the capsule and drop in a bit of applesauce, stir it up and eat. I also take Vit D3, 2000 IU and B6, 50 mg. After my stomach settled down in about a month, the side effects I have been left with are fatigue and weight loss, sometimes night sweats, and insomnia. Remember to take the pills at the same time of the day, so if you go on a schedule like mine, just stick to it by taking the pills two hours or so after eating a meal. This way I found I slept through the nausea for the most part. And as has been suggested, read through all the earlier posts – they are VERY helpful! Good luck and just have faith your nausea will get better. Pamela

OR @lindam272,Linda The Rifampin gives me the most trouble of all the meds. I take 2 Rifampin and a Digestive Advantage probiotic all at once with a full bottle of water when I first get up in the morning. By the time I do my breathing treatment and get ready for my day, an hour has gone by and I have a light breakfast. I was taking the Zithromyacin with breakfast but it was giving me heartburn, so I pushed it out another hour which has helped. I take the Rifampin between 6:30 – 7 a.m., the Zithromyacin at 9a.m. and 3 Ethambutol between noon and 1:00 when I have lunch. What I like about the way I’m taking these meds, is that I’m done by noon or 1:00. I can then take my vitamins and other supplements with dinner which is a good 4 – 6 hours after my last MAC med.

Here is another post from Katherine. I apologize if this is repetitive. I’m not taking time to read thoroughly but wanted to get some information out to you.

ANTIBIOTICS .. SCHEDULING .. STARTING Since you already started one of your meds .. I would recommend that you request that you wait to start EACH NEW antibiotic at intervals of AT LEAST ONE WEEK .. before adding another antibiotic .. so you can tell EXACTLY which/what antibiotic is causing ANY potential side effect and you can isolate it .. hopefully watching for a side effect dwindling etc. THEN introduce another antibiotic. Frankly WE are in the driver’s seat in our own lives .. our own bodies. Take charge and request that type of schedule if you want it!
ANTIBIOTICS .. SCHEDULING ..DIFFERENT MEMBERS
TIP: REQUEST 90 DAY PRESCRIPTIONS FOR ALL YOUR ANTIBIOTICS .. THEN YOU HAVE JUST ONE CO PAY.
BEST Here from one of our members is what I think is REALLY good advice on starting the antibiotics .. hope it helps you! Keep in mind .. YOU may NOT feel “lousy” the first month .. each of our bodies are DIFFERENT .. each of our bodies will react differently .. but the advice I just excellent!
SCHEDULING ANTIBIOTICS From Member @pamelasc1, I began the 3 pill regimen. I did feel very lousy the first month but was told to hang in there, that it gets better each week- and it did! I will tell you how I take my pills, as timing can help, as can taking other supplements. I take them between 9 and 10 PM, just before going to bed. I take with a lot of water. I try to put a minimum of 2 hours between eating dinner and taking the pills. Every day I take a probiotic to help the gut – the antibiotics wreak havoc with the gut. This can help with nausea – I take my probiotic with breakfast or lunch – do not take it late in the day. I use Ultra Jarro-Dophilus – 50 billion per capsule – will find in the frig at any health food store – I open up the capsule and drop in a bit of applesauce, stir it up and eat. I also take Vit D3, 2000 IU and B6, 50 mg. After my stomach settled down in about a month, the side effects I have been left with are fatigue and weight loss, sometimes night sweats, and insomnia. Remember to take the pills at the same time of the day, so if you go on a schedule like mine, just stick to it by taking the pills two hours or so after eating a meal. This way I found I slept through the nausea for the most part. And as has been suggested, read through all the earlier posts – they are VERY helpful! Good luck and just have faith your nausea will get better. Pamela
OR @lindam272,Linda The Rifampin gives me the most trouble of all the meds. I take 2 Rifampin and a Digestive Advantage probiotic all at once with a full bottle of water when I first get up in the morning. By the time I do my breathing treatment and get ready for my day, an hour has gone by and I have a light breakfast. I was taking the Zithromyacin with breakfast but it was giving me heartburn, so I pushed it out another hour which has helped. I take the Rifampin between 6:30 – 7 a.m., the Zithromyacin at 9a.m. and 3 Ethambutol between noon and 1:00 when I have lunch. What I like about the way I’m taking these meds, is that I’m done by noon or 1:00. I can then take my vitamins and other supplements with dinner which is a good 4 – 6 hours after my last MAC med.

You will find a wealth of information and support here. And many others with GERD who can speak to that – I’m not one of them who has that issue so much. Feel free to ask more questions as they come up and after reading this. We will walk this journey with you and your mother. Linda

@laural856

Hello all. My mother was just diagnosed with MAC/MAI. She’s been so down in the dumps. Are there any tips/useful information that you can share that you wish you had known when you were starting out? She started the 3 antibiotics today – when do most of you take these? Morning? Afternoon? Evening? With meals? Between meals? She is dealing with horrible GERD – can you take antacids or reflux meds along with the antibiotics? Any info that you can provide will be so helpful and very much appreciated. Thank you!!

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Wow! Thank you so much for compiling all of this info, Linda. This is so helpful. I will copy and paste and start a file for my mom. I’ll encourage her to check out this forum – I think it would be extremely beneficial to her. I think it will do wonders for her to know that she is not alone. Thanks again!

Laura

@laural856

Hello all. My mother was just diagnosed with MAC/MAI. She’s been so down in the dumps. Are there any tips/useful information that you can share that you wish you had known when you were starting out? She started the 3 antibiotics today – when do most of you take these? Morning? Afternoon? Evening? With meals? Between meals? She is dealing with horrible GERD – can you take antacids or reflux meds along with the antibiotics? Any info that you can provide will be so helpful and very much appreciated. Thank you!!

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Hi Laura: I had to take the pills 3 days a week. I spread them out during the day to go easier on my system. If I got nausea, i ate something and it always went away. The azithromyacin was the worst because it caused cramping and the runs. I lost a lot of weight.
Because of gerd, I did not eat much at night, tried to take the last pill by 5 pm. I lasted about a year and a half and then my system could no longer tolerate. I was so tired all the time, and I got every symptom they warned about, every one! Now I just use the nebulizer, followed by half hour of aerobics, supposed to help mucous clearance. Good luck, not sure what is worse, the disease or the pills! xo

@laural856

Hello all. My mother was just diagnosed with MAC/MAI. She’s been so down in the dumps. Are there any tips/useful information that you can share that you wish you had known when you were starting out? She started the 3 antibiotics today – when do most of you take these? Morning? Afternoon? Evening? With meals? Between meals? She is dealing with horrible GERD – can you take antacids or reflux meds along with the antibiotics? Any info that you can provide will be so helpful and very much appreciated. Thank you!!

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Question? Did you have Gerd before you started the meds or did they cause the Gerd ? Feel like I’m on verge of vomiting quite often. Is it azithromyacin, which I am on. Thanks

@laural856

Hello all. My mother was just diagnosed with MAC/MAI. She’s been so down in the dumps. Are there any tips/useful information that you can share that you wish you had known when you were starting out? She started the 3 antibiotics today – when do most of you take these? Morning? Afternoon? Evening? With meals? Between meals? She is dealing with horrible GERD – can you take antacids or reflux meds along with the antibiotics? Any info that you can provide will be so helpful and very much appreciated. Thank you!!

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Thanks for your detail of what and when you take the meds. So helpful. I don’t know what I don’t know. Thank u

@laural856

Hello all. My mother was just diagnosed with MAC/MAI. She’s been so down in the dumps. Are there any tips/useful information that you can share that you wish you had known when you were starting out? She started the 3 antibiotics today – when do most of you take these? Morning? Afternoon? Evening? With meals? Between meals? She is dealing with horrible GERD – can you take antacids or reflux meds along with the antibiotics? Any info that you can provide will be so helpful and very much appreciated. Thank you!!

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Hi Bonnie: I think the pills may have caused the gerd, but I also discovered I had a very small hiatal hernia, which also causes it. But now off pills, and gerd almost gone. Have to be careful at night but I was never much of a dinner eater. if I do eat dinner I make sure I am moving for at least an hour after. Now I use motion and gravity to get rid of gerd, and it works, no pills at all, low fat. common sense diet. xo

@laural856

Hello all. My mother was just diagnosed with MAC/MAI. She’s been so down in the dumps. Are there any tips/useful information that you can share that you wish you had known when you were starting out? She started the 3 antibiotics today – when do most of you take these? Morning? Afternoon? Evening? With meals? Between meals? She is dealing with horrible GERD – can you take antacids or reflux meds along with the antibiotics? Any info that you can provide will be so helpful and very much appreciated. Thank you!!

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Bonnie – This is Irene. I had GERD first – at least I think so, because there is always the possibility we didn’t know we had MAC until we knew! The azithromycin is the substitute for clarithromycin which doctors say causes side effects. Perhaps you can switch. However, I suspect it is one of the other two.

@laural856

Hello all. My mother was just diagnosed with MAC/MAI. She’s been so down in the dumps. Are there any tips/useful information that you can share that you wish you had known when you were starting out? She started the 3 antibiotics today – when do most of you take these? Morning? Afternoon? Evening? With meals? Between meals? She is dealing with horrible GERD – can you take antacids or reflux meds along with the antibiotics? Any info that you can provide will be so helpful and very much appreciated. Thank you!!

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Thank you everyone. All your comments help in understanding all of this happening to my body. Bonnie

@laural856

Hello all. My mother was just diagnosed with MAC/MAI. She’s been so down in the dumps. Are there any tips/useful information that you can share that you wish you had known when you were starting out? She started the 3 antibiotics today – when do most of you take these? Morning? Afternoon? Evening? With meals? Between meals? She is dealing with horrible GERD – can you take antacids or reflux meds along with the antibiotics? Any info that you can provide will be so helpful and very much appreciated. Thank you!!

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Hi Bonnie. Please feel free to continue to ask questions or add comments; it just might help another newcomer. – Hugs Terri M.

Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that I would like to resign effective immediately as Volunteer Mentor of the ” MAC & Bronchiectasis Mayo Connect”. I feel @windwalker Terri is working very hard currently as well as all the wonderful members jumping in to help her keep the Forum alive and well.

I want to thank All Members for a wonderful experience .. it has been one of the most rewarding volunteer efforts of my life. I received MUCH more than I ever gave. I feel very comfortable departing as any Newcomer has been given instructions in https://connect.mayoclinic.org/discussion/file-cabinet-information-from-katherine/

to find any knowledge/wisdom that I may have been able to impart while I was the Volunteer Mentor. As new information becomes available .. Terri and the others will add it to the Forum. I have every confidence that the MAC & Bronchiectasis Mayo Connect will be alive and well just as long as it is needed!

Farewell to all .. thank you for the opportunity to serve you. I am sending Big Hugs and positive energy! Katherine

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