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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 am so thankful to find this thread. I just started airway clearance at the end of October and I still can not bring up sputum. My doctor has me on levabuterol and then 3% saline. I inhale so deeply that I get light headed. I do cough sometimes but do not bring up mucous. After nebulizing the levabuterol and 3% saline I use the aerobika and the huff cough and still do not bring up mucous.
I wonder, if anything is happening? The respitory therapist only did a zoom call with me, pointed out the equipment to use, and did not explain much else.
I don’t feel like I am getting anywhere.
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1 ReactionIsn't this "I don’t feel like I am getting anywhere" a frustrating feeling?
For all of the activity you see here on the MAC & Bronchiectasis group, we do have a "rare" disease - or actually 2 of them.
If you are becoming light-headed while while nebulizing, you need coaching in proper breathing while doing it. The inclination is to "really suck in hard" to get the meds down into the lung, and many of us begin like that. But your breathing should be more normal, with pauses between inhale & exhale to let the aerosol do its work & penetrate into your lungs.
So...sometimes it is necessary to become out own best advocate in our care. It sounds like the RT you visited with may not have been the best one for you. Instead of a Zoom consult, it sounds like you need to push for a in person RT with someone familiar with bronchiectasis. There are many techniques you can learn to try to get the mucus moving...
Can you ask for in person therapy?
Sue
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4 ReactionsSue,
Thank you for your comments and suggestions. I am going to Mayo in Jacksonville, Fl. The only way they do respiratory appointments are by zoom. Also, the therapist went out on maternity leave 2 days after my appointment.
The fill in for her is not a respiratory therapist.
I am going to email my Doctor to see, if she can help me.
Sally
Please, mention to the doctor The Vest since you are struggling. Hopefully your insurance covers it. Medicare covers it for me.
Have you downloaded the Autogenic Drainage App? It will teach you to do calm short breaths to loosen mucous, deep breaths to collect mucous plugs and a huff to move the mucous up. I used to zealously do airway clearance. It worried my husband who heard how laborious it was. It really doesn’t have to be that. The App taught me to do it calmly. I do 2-3 sessions followed by 3 huffs and a cough/session.
Best of luck. Hopefully, this time, your culture will be negative for MAC and stays that way.
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1 Reaction@lauraadam2425...It's frustrating to work so hard and get no results. I use the nebulizer 2x a day with asthma medications and albuterol, 3 nebs in all. Then I use the flutter valve while doing postural drainage. (see youtube) Mucinex and extra water help get the mucus loosened up and the drainage with flutter valve helps it get out. My pulmonologist noticed the bronchial tubes close up when I cough. It took 14 months of the Big 3 to kill the MAC. Don't give up. Think of it as Non-tubercular Mycobacterium. Thank goodness we don't have to stay in sanitoriums!
hang in there. Some of the other members use 7% saline. What do you use?
I use 7% sodium chloride and 2.5 % albuterol 2 x a day with the flutterer each time. Still nothing comes up and it just makes my cough worse. But after all the replies I have gotten will keep at it and see what happens. Thanks all!
Recently diagnosed with MAC, seeking info on best medicine to take
Hello, and welcome to Mayo Connect. I think we need a little more info about your health and diagnosis, then we can talk about the doctor(s) who are treating you, their recommendations and questions to ask them.
Why? Because MAC (Mycobacteria Aviums Complex) infection can vary in exact strain, the level of illness you are experiencing, all of your health conditions and whether you need antibiotics now, alternative treatments or both.
How and when were you diagnosed? Are you seeing a pulmonoogist or ID doc?
Sue
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2 ReactionsThat is so great that you are MAC free after 14 months! I have been on the Big 3 for 1 month and tolerating it well (I know it is still early) but did you experience any negative effects? Also, do you have any tips for minimizing my exposure to NTM? I of course am doing all the usual precautions and I just sent in a sample to test my tap water. It is hard to find something to drink when I go to a restaurant because I can't drink their water or have their ice cubes. Any suggestions since you are so far ahead of me in this fight.
I am also fairly new to these routines and started airway clearance last summer. I also did not get much advice and have learned a lot from reading this site. Like you, I was inhaling so hard that I was worn out by the end of the session. The last time I saw the pulmo and shared this with him and he advised normal inhalation and exhalation. It has made the sessions much more tolerable. However, like you, I also do not bring up sputum. I don't know if that means there is none in my lungs or if I am unsuccessful at bringing it up. I also am not a cougher. I purposely cough a couple of times after the huff coughs, but that's it. Hang in there and I wish you the best. Donna T