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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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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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I take dexilant for my acid reflux. I take in the a.m. with my other stuff. I hope you get past your stomach issues. God bless. I will be praying for you.
The only drug I could not tolerate was Rafampin. I got a rash and felt dizzy. The other two, ethembutol and clorithromyacin had no side effects, especially after 6 years. I think the fear is worse than the actually negative effects. Very few people have bad side effects. Most people can tolerate them unless they have unusual allergies or often have to mix with other meds. Always take good probiotics and figure out what works best with your body. I know so many people have a love/hate relationship with antibiotics, but honestly, we'd all be really bad shape if they were never discovered.
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1 Reactioncila, I SO agree your Doctor should have been more forthcoming about your meds .. what a difference it would have made in your journey! That is EXACTLY why I have educated my two granddaughters to ALWAYS get to know a female pharmacist where they get their prescriptions filled.
Why? BECAUSE doctors have SO little training in pharmaceuticals in medical school .. THEN in the intervening years HOW on earth do they keep up with all the new medical knowledge .. techniques etc PLUS new meds? A LOT of their newer knowledge comes through the latest meeting with their pharmaceutical rep!! NO WAY am I going to take a doctors advise on meds without my own "due diligence"!! Any time I get a new prescription I call DIRECTLY to my trusted pharmacist who has a list of any/all of my allergies/side effects .. and discuss the pros and cons of this newly prescribed med. Plus is there an older more tested generic med rather than the newest fancy prescribed med the latest pharmaceutical rep is pushing!
The newest meds are usually way more expensive AND less tested in terms of side effects and problems. If there is an alternative .. I have absolutely no problem calling my doctor and just merely "asking" if there is a medical reason I cannot use the older drug .. why not etc? I NEVER forget that I am in the driver's seat in terms of taking care of my own body .. I am the one who will have to deal with what ever happens .. not the doctor. Due Diligence is MY responsibility! Just my opinion. Hugs to all! Katherine
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1 ReactionThank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs of varying colored mucus nightly...2-5 hour sessions only at night and going to a variety of good Drs...and having all kinds of tests...a bronchoscopy washing revealed mycobacterium Avis complex. It is now at State Lab for sensitivity tests.i will have appt with my pulmonologist here in Wisconsin ( and the infection control Dr he is referring me to) but I am guessing I will consider second opinion with Dr A or go to a specialist at National Jewish...any names there to suggest?? My daughter lives in Denver so that is a plus. Again thanks to all of you...glad I found this site tonight....BLESS Google!
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1 ReactionIts good to know people are having few side effects even though if you read the papers that come with the meds, you want to go and hide in a cave!!! I am praying for each of us to get well soon.
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1 Reaction@tdrell, there are a few of us here with NTM/MAC that live in SE Wisconsin, and we have fabulous docs. If you're in Central or Northern Wisconsin, the Mayo Clinic may be the closest for you.
Your daughter lives in Denver? There's a lecture in Denver on Sept 17th for patients & families with NTM/MAC that was posted on the American Lung Association blog -- your daughter (or you) may want to attend. It's at the Molly Blank Conference Center, National Jewish Health Main Campus in Denver. Best wishes to you! - Paula
https://www.inspire.com/groups/american-lung-association-lung-disease/discussion/ntm-lecture-series-for-patients-and-families-sept-17-denver-co/?ref=as&asat=417277477
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2 ReactionsWelcome tdrell .. so glad you found us! Since you live in Wisconsin you are very close to Mayo Clinic in Rochester MN. You certainly can choose to visit your daughter in Denver .. two birds with one stone .. but if you choose a doctor close by .. my doctor at Mayo Clinic specializes in MAI/MAC. He is Dr. Timothy Aksamit and I can tell you .. he is one of the most caring people on this earth .. I just don't know how I could have done this without him. If you read through the pages of this Forum to educate yourself .. and I HIGHLY recommend you do so .. Due Diligence! .. you will find some others who go to him. It is absolutely your call .. but it gives you an option. If that is what you choose to do .. call 507-266-0415 as soon as possible because he is pretty popular and not quick to get into.
Again, I am so glad you found this Forum at the beginning of your journey .. despite it being a scary thing it is positive to FINALLY have a name for what on earth is happening to your body! Putting a name to the "face". Now it is VERY important for you not to "freak out" .. and start thinking that if you need to start the antibiotic treatment that you are going to have all the crazy side effects that are in the ridiculous inserts that come with the meds .. OR the side effects that perhaps a different person may experience! YOUR body is YOUR body .. and it will react the way YOUR body is going to .. for the period of time YOUR body is going to react! Each of us is unique .. and the time period it takes us to adjust to each of the meds will be different .. SO just go with the flow. "Trust the Process" .. trust that the antibiotics will kill those critters .. trust that your body will adjust .. trust that time will heal .. AND trust that all of us will be here to help and support you through your journey! Then I trust that you will be here to help other new people through THEIR journey when they arrive .. we are all in this together! I am sending you a Big Hug .. keep coming back .. with your questions .. with your concerns .. when you need us! Katherine
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1 ReactionAgree completely...not with just meds but everything medical...we know our bodies best, docs know our bodies least (other than the rare few) as practices now are set up to spend very little time with each patient, and given same time insufficiency for anything but crunching patient visits, docs spend no time researching on our behalf. I've gotten much more accomplished for myself and my elderly parents' health care w/my own research than would've ever happened wo. When docs' staff ask if you're in the healthcare industry, you're on the right track!
Katherine
Absolutely, the drugs are not as bad as all the hype, in some cases. It started out badly for me, I was ready to give up, but stuck with nausea and horrid fatigue when first on the drugs. 4 weeks later, I'm much better, blood work for kidneys and liver is fine, and I'm praying the drugs are working. Will report in 10/6 after my Mayo Rochester appointment with Megan Dulohery who works w Dr Aksomet.
Re Dr Aksomet, I could not get into home, or to any Mayo Pulmonary doc with a MAC diagnosis. A doctor friend got me in. I think you can call back daily and try for a cancelation but I don't want anyone to think it's an automatic to get an appointment. Or, maybe you have a suggestion on how to go about it I did not know about. Does a referral from another doctor help? How did you do it? Just in case someone calls for an appt and is turned down initially, doesn't mean you won't get in. Mayo is a great place, I feel I'm getting some of the best care possible that is close to me. I did have National Jewish lined up for an appointment, staying in Denver for a week would have been costly, but I would have gladly done it. I think finding a doc that knows NTMs is really key.
Thank you Katherine and everyone for your ongoing posts.
Kay S
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1 Reactiontdrell and Kay S, I'm SO glad you pointed this out .. the difficulty of getting into Dr. Aksamit. I think that because I was diagnosed in 2007 .. BEFORE he became so "famous" .. I can now get in. BUT in my last appointment he said he now works .. as Mayo Clinic does .. with a "Team" of Pulmonary people in MAI/MAC. SO I wish I had told you tdrell to call that phone number and request a Pulmonologist that WORKS as a TEAM with Dr. Aksamit! That is a MUCH better approach. Truth is I think it is pretty tough to get into him now .. AND my understanding as doctors at Mayo work as a team and discuss things with each other .. the team approach. So your working with Megan Dulohery is EXACTLY what I am thinking of .. a direct conduit to Dr. Aksamit.
Frankly .. people fly into Mayo Clinic from all over the world .. never having a clue WHICH person they are going to see .. and are just grateful they are at "Mecca" .. so I am happy to have access to all these wonderful people and their knowledge of my disease! I think one key to an appointment with a Pulmonologist at Mayo is to make an appointment as far out as necessary .. tell them you will also take any cancellation thereafter .. THEN once you have just ONE appointment .. you are "on the books" .. and you won't have that much trouble ever again. You just have to get that FIRST appointment .. that is why book an appointment even if it is months ahead! Just get started .. that's my opinion. Hope this clarification helps a little! Katherine
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