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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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I have been reading all these posts about MAC and don't know if they relate to my carcinoid which is in small intestine. Can anyone answer that? I have not been diagnosed with lung NETs.
Hi Gayle,
If you click View & Reply in the email notice then scroll up 7 messages you'll see my response to your query about NET and MAC.
The short answer is that I could find no evidence that supports a predisposition to MAC if you have carcinoid of the small intestine. Dont hesitate to ask your oncologist if you are worried.
However, I believe you may be causing yourself undue concern by reading the MAC discussions.
If you wish to unsubscribe fro the MAC discussion, please click "unsubscribe" in the bottom of the email.
I hope this helps.
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2 Reactions@gaylejean, Gayle, I ABSOLUTELY could not agree with Colleen more! Over the years my husband and I have dealt with numerous health issues .. how? By ONLY dealing with them when/IF they were NEEDED to be dealt with .. NOT putting the cart before the horse .. if the health issue was NOT "in our face" .. we dealt beautifully with it with "denial" .. it did not exist! We just went on with our lives .. happily .. serenely .. as healthily as we possibly could!
Gayle, as Colleen mentioned .. I would just focus on being as happy and healthy as you possibly can .. work out as best you can .. eat healthy .. focus on healthy happy relationships .. work on being as serene as you possibly can .. remembering that stress can damage our health. Sending you a happy healthy Hug! Katherine
@chinasmom, Becky, thank you jumping in .. that is REALLY good advice! Hugs to you! Katherine
@katemn Hi Katherine: We all learn from Mayo Connect, don't we? Glad to find a new person with NET! Teresa
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1 Reaction@katemn, first of all thank you for the time you take almost hourly to help everyone! You had mentioned the website to buy the Aerobika breathing device. There are several different types of things to buy on that website....which ones would be recommended. My name is Amy, and as I stated earlier this week, I will be starting the 3 meds on Tuesday. I currently have no inhaler of any kind, but my doctor is prescribing the Alcopella, which sounds like it may not be useful. Thank you for help once again! Amy
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1 ReactionThank you!
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1 Reaction@beatitnow, Hi Amy, thank you for the kind words! If you go to: http://www.aerobika-therapy.com/order-today/ .. it shows the one I ordered .. and I think the one everyone on our Forum uses. Just to make sure .. when you start your meds on Tuesday .. I would recommend that you request that you start ONE antibiotic at a time for ONE WEEK .. or at LEAST 4-5 days before adding a second 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 a SECOND 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!
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!
From my "File Cabinet" .. 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
When you say your doctor mentioned "Alcopella" .. I think you mean ACAPELLA? https://www.smiths-medical.com/products/respiratory/bronchial-hygiene/acapella-vibratory-pep-therapy-system. It is VERY similar to the Aerobika but has not seemed to work as well for many of us .. AND is not as easy to keep sterilized. ASK your doctor: If I must invest in just ONE .. is it ok if I invest in the Aerobika? Tell the doctor .. I have a "friend" who has used both and has found the Aerobika MUCH more effective and easy to steralize ! See if your doctor is ok with purchasing the Aerobika. Frankly my own doctor told me about the Acapella .. I didn't even find out about the more effective Aerobika EXCEPT here on our wonderful little MAC Forum and just went ahead and bought it .. it IS my body and my lungs! How do I use the Aerobika? This is JUST MY routine:
Below is my particular routine in using my Aerobika from my "File Cabinet"
1. use my 2 inhalers PRIOR to brushing my teeth (the inhalers open the airways .. ask your doctors IF you should be using one .. everyone is different!!)
2. use a "huff" cough at least 3 times .. like you were cleaning your glasses and fog them with your breath .. only MORE forcefully. Then use the Aerobika device per the instructions. Do the huff cough along with the Aerobika until you feel you have gotten up as much sputum as you possibly can. I have found using the Aerobika you are able to " pull" mucous out of those lower lung airways in a way you cannot without the device. Personally I do this twice a day.
3. using peroxide to dampen my toothbrush and toothpaste to brush (purchased a squirt dispenser for the peroxide)
4. rinse my toothbrush .. then using peroxide for toothbrush storage for sterilizing
I think this routine will help oral thrush by keeping my Sonicare toothbrush sanitized daily. http://www.good-gums.com/sanitizing-your-toothbrush.cfm
5. Use my Expand-A-Lung Breathing Fitness Exerciser http://www.expand-a-lung.com
Amy, hope the above helps just as bit! Keep us posted on your progress .. we are here for you every step of the way! Hugs to you! Katherine
You are misspelling the last, so would be great to get me correct name/spelling; know the others. I think she needs a new Rheumatologist as well. I believe she is over-medicated so no surprise adding the strong MAC drugs is problematic. Are the litany of drugs she's taking for her RA managing it for her? Also, Celebrex cannot be taken over a long period as can cause damage to the stomach lining. Please get her to the University to see both Rheumy and ID docs...Hopefully they'll straighten out the drug mess she seems to be in. Agree with post re: prophylactics to ease her symptoms once she's d/c'd the MAC drugs until you get her to a good doc.
@boomerexpert, Boomer, thank you for jumping in since you are so familiar with getting her to a good Rheumatologist .. but could I suggest that you begin your post with the @ilgrp4e, Carmen .. since we have so many members/posts that our various posts do not get posted directly under a new member's original post? New members are not as familiar with just how our Forum works. Again, thank you for jumping in with good advice that our MAC members might not be familiar with. Katherine