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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- 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
- 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!
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<br> blockquote, div.yahoo_quoted { margin-left: 0 !important; border-left:1px #715FFA solid !important; padding-left:1ex !important; background-color:white !important; } Thanks for your response on taking the meds as I am just going to start them on MondayOf course I am scared to deathMy doctor did not recommend a schedule of when to take them so I am very interested in the schedule that works for youI have to start somewhere and your experience will help to guide meHowever I am wondering if you take all of the meds with food. My understanding is that Rafampin needs to be takenOn an empty stomach either one hour before food or two hours after eatingWould really appreciate knowing more about your regimenThanks so muchLynnSent from Yahoo Mail for iPhone
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1 ReactionTry not to be afraid. I had never heard of MAC and was so sick at the beginning. I had not found this forum until Inwas well on my way to being established. My doctor told me I could take the drugs at different times of the day or take them all at once. I experimented with times and finally started taking them all the first thing in the morning before breakfast as I could not notice feeling worse immediately after taking and just wanted to get it out of the way. I did not take Rifampin but was given Rifabutin. We all take basically the same drugs. Some 7 days a week and some every other day. My doctor gave me treatment every day. I feel like as long as our doctor is giving the same care, we do not have to go to a major medical to get good care. It gets better and is not intolerable. Just seeing the improvement on my chest films every month made it all seem better. Listen to your body and do whatever you have to to get through the first few months.
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1 Reaction@lynnettehuler .. Lynn, 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!
**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.
Lynn, I am going to add what worked for Pamela:
@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
Lynn, try mine first .. if that doesn't work .. then try Pamela's. With mine at least you will find WHICH one is causing WHAT side effect. But each of us must experiment and figure out what works best for our own bodies .. our bodies are so individual! Lynn, keep coming back and keep us posted on your progress .. we are all on this same shared journey. Hugs to you! Katherine
@lynnettehuler - I have been on meds for MAC since December last year. I began mid-December with Zithromyacin 1x day. Ten days later - the day after Christmas, I began the Ethambutol - 3 per day. I started out by spacing them apart through the afternoon. I began the Rifampin Jan 6th, right after I got back from a short trip to CA. 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. I had lots of input from our mentor, Katherine, and another woman I know personally who also has MAC and CF. 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. The reason I take the Digestive Advantage probiotic is because I read a newspaper article where Dr Oz stated that he liked that particular probiotic because it held together longer so that more of whatever is in there reached the gut. It has binding agents to hold it together apparently. You might laugh at reading Dr Oz's name on this blog among all these awesome MAC docs, but it works. I was taking 3 probiotics before and decided to try the one (not to mention the least expensive one at that) and I'm not having any bad stomach trouble. I count myself one of the lucky ones not to be having such horrible side effects. There are some mornings where I just need to lay down for a few minutes while my body works on the meds and water I so rudely started the day off with but most days I'm able to get through the day with minimal disruption from the MAC and the meds. This blog has been a life saver for me. Reading the then, 19 pages of posts really opened my eyes and helped me to understand this disease like I would never have otherwise. This is information you won't get from your doctors. And what makes it so valuable, is that it's from people who are or have experienced it and have paved the way to make our lives a little bit easier by sharing their experiences. Best of luck to you! You can do this!! Linda
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1 Reaction@21042 .. Kathi and @lynnettehuler Lynn and @lindam272, .. Linda's advice of "Reading the then, 19 pages of posts really opened my eyes and helped me to understand this disease like I would never have otherwise. This is information you won't get from your doctors. And what makes it so valuable, is that it's from people who are or have experienced it and have paved the way to make our lives a little bit easier by sharing their experiences" is EXACTLY what makes our MAC & BRONCHIETASIS Forum SO wonderful .. that fact that just today SO many members have jumped in to share their experiences and support to new people .. KNOWING just how scary it is in the beginning. This is just one GREAT community .. I am SO proud to be a part of it! So Kathi and Lynn .. read .. do your "due diligence" after educating yourselves .. and keep coming back with your questions and concerns .. we will be here for you every step of the way on this our shared journey. Hugs to all! Katherine
<br><br><br><br><br>Hi Terri! How is it going at the Mayo in Florida? Terri M.<br> <br> <br><br>
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1 Reaction<br><br><br><br><br>Hi Mary Jo, what dates will you be at the Mayo?<br> <br><br>
Thank you
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1 ReactionHi all, this is the very first time I've ever joined an online discussion group & I have no idea if I'm doing it correctly! I'll give it a try though. I'm 42 & have had a rare, undiagnosed lung disease since 2007. I've been to great doctors & hospitals & yet no answers. I also have immunodeficiency & get IVIG every 2 weeks. Then to add to all of this, a bonchcoscopy/washings came back positive for MAC (& Aspergillis but probably in my nose). And the most recent Lung CT scan showed the bronchiectasis. So for the past 6 months we have been trying to decide on whether to start treatment because I'm already on 28 daily meds (with a total of 46 including my PRN's). I'm not an easy case & we really wanted to weigh all measures before proceeding with treatment due to the high risk for side effects. We had our appointment yesterday & decided to start today! I'm very nervous! I was online looking for info that I hadn't yet come upon & found this chat/discussion/forum. I'm hoping to find some information but also some support. I feel so alone with this right now, so reading your entries is somehow comforting knowing I'm not the only one. It's another big bump along my health journey & lung dysfunction. Very frustrating & scary to me. I'm overwhelmed. I feel like others don't understand but at least here, I know that you can relate. So thank you for being there!
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2 ReactionsJentaylor - I'm glad you found this group. I am one year older than you and was diagnosed last year with MAC and sjogren's both things I had never heard of and find little info about. My lung function was very low as well. I ended up going to mayo clinic and they determined that I have restrictive lung disease caused by my sjogrens. My MAC cultures have been clear since august taking the 3 antibotics so that is good for me so far, we can concentrate more on the restrictive lung disease which I just started the immuno suppressive drug mycophenolate a month ago, they wanted to be sure suppressing my immune systen that the MAC wouldn't come back, so far ao good, and will have ct and lung function tests in a couple of months for that. There is A LOT of info in this group and a lot of support. I pray you find answers, ask questions and find healing.
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