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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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Maryjo I also got shingles last spring....9 years after having vaccine. They put me on an antiviral med and neurontin for pain.It was shot lived and not too bad. I read that about 30 % of folks vaccinated still get shingles but not as bad.
I asked my ID dr at NJH re current thoughts on getting boosters for the vaccine. SHe said there is talk.....but that there is a much better vaccine being worked on in Europe and to hold out a few years for it. Terrid
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1 ReactionThanks for the info Terri .. if you hear about the vaccine from Europe let me know .. I think I'll do a google alert on it! Hugs! Katherine
Katherine ....i think she said it would be a few years....terrid
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1 ReactionTerri, interesting article:
London-based GSK has just submitted a Biologics License Application to the FDA for its shingles vaccine candidate, Shingrix. Though it is still experimental, the vaccine is proving itself superior to the standard vaccine from Merck & Co and could net British drugmaker close to €1Bn, says FierceBiotech. Katherine
http://labiotech.eu/gsk-shingles-vaccine-shingrix/
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1 ReactionI am trying to locate a post i wrote today but had to stop in the middle to check something on google before i posted itl so i just skipped to google and then went back to find the post i did not send? I have spent hours trying to find it but maybe it was deleted cause i didnt actually send it. I am new so i did not know how to get it back. Do i type it over again? Blessings
@georgette12, I've done exactly the same thing myself! What I've tried to do is:
1. go back to the message I was trying to respond to .. OCCASIONALLY my partially typed answer will be there
2. MOST often I have to start all over and it is SO frustrating!
3. so most often when I want to google something I make sure I open a separate page so I don't mess with my posting page! However I don't always remember to do that!
Good luck .. glad you are with us! Is your name Georgette? Hugs to you! Katherine
@katemn
Hi Kate
I have been diagnosed with MAC Avium Intracell....... plus underlying sarcoidosis and have been on meds (Clarithromycin, Rifadin & Ethambutol) for almost 8 months. During the last month, I have been experiencing extreme fatigue - do many of our other sufferers find this, and what can they do to manage the problem. I feel that I would like to stop medication as the cure is worse than the disease.
Cheers
Josephene.
To Maryjo and Katherine and anyone else who has thoughts on this concerning the use of inhalers: I was told to use my inhaler Symbicort twice a day, just for maintenance. I also have Ventolin on hand for when I really feel I can not get my breath, but that is rare and I may use it once every 3 or 4 months. Could I, like Maryjo, NOT use the Symbicort daily if I feel my breathing is normal? It would be nice to take something out of my "diet" of lung meds. Or does taking the Symbicort make for improved lung function when taken daily? I have missed taking it on some days, and notice no difference when I miss a dose. Any thoughts? Pamela
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1 Reaction<br><br><br><br><br>I have read conflicting reports about the use of corticosteroids with <br>bronchiectasis. Sometimes drs weigh the benefits to the risks and decide what is <br>best. I am supposed to be on symbacort, but I rarely use it partly because I <br>don't think of it, and like you, I cannot feel the difference. Symbacort <br>not only opens airways; it fights inflammation. We don't always feel these <br>things. Do some research on corticosteroids and make a list to discuss with <br>your dr. I will be talking about this at my next dr visit in June.<br> <br><br>
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1 Reaction<br><br><br><br><br>Yay! You are seeing my doctor! I just love that man. I will be at the <br>Mayo Feb 7. If you are too; maybe we can meet. -Terri M.<br> <br><br>
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