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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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Chlorine is commonly used as an antiseptic and is used to make drinking water safe and to treat swimming pools. I know it's unheard of to wear mask when swimming but do they have any evidence pools are unhealthy? I.e., perhaps skin irritation. I like my Good Life membership just being careful - no underwater dunk..
Thank you Katherine! my name is Angie and I just turned 46 in April. I have benign tumor in my left temporal (since it is in my speech and comprehension area) they will not remove it so I was put on a trial study 8 years ago with a pacemaker that was placed in my skull, this has been a long journey for as well as having a hard time with side effects of seizure medications. When i was diagnosed a couple months ago with bronchiectasis and MAC infection, this was even more devastating and shocking than dealing with my brain surgery and tumor!! They think I may have developed the MAC from "aspiration", but of course don't know for a fact. What is so strange is i've had this clear constant runny nose, daily coughing and fatigue for the last 3 to 4 years which I assumed was a side affect of a new seizure medication i had started. So I just don't know if i should try and come off this seizure medicine and see if these side affects go away or did it just happen coincidentally at same time? I had started the 1st antibiotic almost 2 weeks ago and it is causing me problems with sleep and don't know if i should see if i will get use to it or try another kind of antibiotic, but my body is so sensitive to all medications so i believe i'm going to have a problem with any med!?
It's been interesting listening to everyone else with the same similar problems!! Hope you have a good day!
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2 ReactionsHugs to you, @katem8 🙂
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1 ReactionHi Tessie,
I became sensitive smells after coming down with MAC.
Chlorine was one of them. I couldn't even sit beside a swimming pool without
getting all 'Feclempt' - a yiddish word for gummed up in the throat & lungs.
I don't go into pools or hot tubs any longer. At the conference there was
mention that chlorine actually concentrates the MAC bacteria. I wonder if my
aversion to chlorine was my bodie's way of telling me to stay clear, that it is
unsafe for me?
Also, I have read that it would take a higher dose of chlorine than what is
used in pools and hot tubs to kill MAC. That the MAC has developed a resistance
to chlorine by being exposed to repeated lower doses. It has also built up a
higher resistance to water temperature. It now takes 120 degrees and higher to
kill it.
Teresa, I think that unless chlorine is very diluted, that it is
just not good for anybody.
Hello Jen! Happy Thursday! How are you feeling today? - Terri M.
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1 ReactionLatest out of NJ indicates the following: soaking shower head in chlorine for 30 minutes kills NTM bacteria but no indication for how long and how often to repeat (sigh...); newest guidelines for water heater temp now back to 120-125 as research has shown higher temps create heat resistant bacteria (sigh #2...).
Frustrating but better than nothin!
@anr38, Angie, we are so glad you found us .. and I am hoping our wonderful Community will hop on with MORE great advice for you PLUS support .. as I am on "Sabbatical" battling my own issues. But I pulled the below from my File Cabinet .. I hope some of it might help you! DO NOT put an ounce of energy trying to figure out HOW you got MAC/Bronchiectas .. "What is .. IS" .. NOW put ALL your energy into battling these nasty critters! YES, these side effects WILL subside .. when .. depends on each of our bodies .. as you read through the back pages you will realize that! DO READ the back pages .. EDUCACATE yourself! Knowledge is Power! Sending Hugs to all! Katherine
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.
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