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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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that should be Mayo Clinic in Jacksonville - I don't see a Dr. Fennelly listed there either. Thanks - Barb
Chocolate...
Reading on mucus food
https://livelovefruit.com/foods-that-cause-excessive-mucus/
Hello Barb, I do saline inhalation and yes I cough so bad. What I do I stop and sip a little bit of water. when I stop coughing continue sometimes it takes 30 min. I have dry bronchiectasis so I don't cough and saline is the only way I can get the mucus out of my lungs. Do you do Aerobika? I have a good news, my Dr. said my sputum culture are negative. I need send culture every 4 months to NJH. Hopefully it will make it better later. Blessing! Cila
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1 ReactionDear Barb!
Question 1 - I have and never will use saline puffer. I use Netti Potti but I think you know the answer. Do you feel it is normal coughing as much as you describe. You may have a negative response? Do you feel it is helping you? If it is no you may
have the answer to your question. As my doctor says we are our best doctor. We are the one who knows if it works or not.
Question 2 - that is a fact and you can find all kind of info on the Web
Mucus and Your Diet. Certain beverages and foods can trigger excessive mucus
production in the body. Two main foods that cause excessive mucus build-up are dairyand wheat. Casein in dairy products (milk, yogurt, cheese, etc.), and gluten in wheatrequire strong stomach acids for digestion.Jun
30, 2015
12
Foods That Cause Excessive Mucus In The Body (and 14 Foods ... i posted this of this site.
or books like Nutritional healing by Dr Balch.
Remember that the MAC is a bacteria and bacteria thrives on sugar etc so we give a chance to the bacteria to colonize in our lungs as my infection Dr said to me so a good diet is important.
Seeing as how a large percentage of the North American diet is made up of dairy and wheat, many people carry bodies that are in a chronic state of fighting off a sort of “viral invasion” – the body
gets confused by the foreign products entering the mouth (like dairy and wheat products), and thus naturally protects itself by fighting these food particles, causing inflammation and triggering excess mucus.
To be a little more specific, here is a long list of foods that create mucus in the body:
– Dairy products (yogurt, milk, sour cream, cottage cheese, ice cream, butter, ghee)
– All corn products
– Eggs
– Sugary treats (cookies, cake, pies, pastries)
– Wheat (bread, pretzels, buns, bagels, muffins, etc.)
– Deep fried foods
– All soy products
– Safflower/sunflower oil
– Jams and jellies
– High-fat red meat
– Alcohol
– Caffeine
Read more at
https://livelovefruit.com/foods-that-cause-excessive-mucus/#szf33JV30JZX1fbw.99
Another factor for Mucus is aspiration as confirm on the video.
Causes
Pneumonia is a common illness that affects millions of people each year in the United States. Germs called bacteria, viruses, and fungi may cause pneumonia. In adults, bacteria are the most common cause
of pneumonia.
Ways you can get pneumonia include:
Bacteria and viruses living in your nose, sinuses, or mouth may spread to your lungs.
You may breathe some of these germs directly into your lungs.
You breathe in (inhale) food, liquids, vomit, or fluids from the mouth into your lungs (aspiration
pneumonia) And more....
A good diet that doesn’t create inflammation and mucous will certainly be preventive for pneumonia.
Hope this will help Barb!
****. I CAN ALSO TELL YOU FOR A FACT THAT SINCE I AM THICKENING MY LIQUID I DO NOT HAVE MUCUS. WOW, WHAT A DISCOVERY! I WOULD NEVER HAVE SUSPECTED ASPIRATION OF LIQUID. I ALSO WAS TREATED FOR FOR SENSITIVITY NAET.
Nicole
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3 ReactionsDear Cila,
I have a question for you? Do you have problem breathing like when you climb stairs or when you walk fast or ...?
@bschaper2 - I cough when I do the inhaled saline but just take a few seconds to get back under control and resume the treatment. You might try a different style of nebulizer. I used the side stream style originally and I don't think I coughed as much as I do now, but I also think it took longer for me to finish the treatment. The delivery may be too much for you so you need to reduce the pressure somehow. Maybe the compressor? Cheaper to try a different style though first and see how that does for you. Linda
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2 Reactions@bschaper2 Hello Barbara, and welcome back. Will answer your questions to the best of my ability. Question #1 I do the saline treatment twice a day. It rarely makes me cough, only recently did it bring on coughing, and that is because I am starting to get some infection again. By doing the treatment, it will clear things out and hopefully not go full blown infected. I am due to start back on my monthly antibiotic cycle so I am sure I will be nipping it in the bud. Hopefully, when you are coughing, stuff comes up. That would be a good thing because you want to clear that junk out. The longer you do the treatment, (as in months), the less irritating it should become. In other words, you get used to it. The other purpose for doing the treatment is because it thins the mucous in the lungs and bronchial tube so that it is less of a breeding ground for bacteria. Question #2 Some foods can cause mucous in some people. Common food intolerances include: milk, glutens (bread, pasta, wheat products), eggs, & food coloring, and sugar. I kept a food diary many years ago and found that my lungs went to crap every time I ate bread or anything with wheat gluten in it. Also, certain dyes in food and drink will cause my lungs to fill up with phlegm. Blue and yellow dye is the worst for me. I cannot drink Mountain Dew (yellow dye) or eat any of the colored M&M's candy, also sugar will gum up my lungs. I went totally gluten free about 10 years ago and only eat whole foods. That helped a great deal. I have several books by Dr. Andrew Weil that offers great insight to this. Please keep in touch and let us know how you are doing.
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1 Reaction@bschaper2 , Barb, can I ask where you live? Maybe we can help you to find a good specialist in your area.
I have a question for those folks who go to the Mayo Clinic in Rochester. My husband has been diagnosed with MAC and bronchiectasis. He wants another opinion from a more specialized doctor than those we have here in Kaiser. I contacted the Mayo Clinic and he has an appointment on November 29. He will be seeing Megan M. Dulohery Scrodin, M.D. She specializes in NTM and bronchiectasis, among other areas. This seems to be good, but my husband, who is also a medical doctor, feels she may be a bit young and not experienced enough. He is wondering whether when you're seen there (at least initially), are you seen by the main doctor as well as others for the initial consultation? Also, what tests will be performed? He just had a CT a couple of weeks ago, so I do not think they'll schedule another one so soon.
On another topic, I was told that the tests would be taken over 2-4 days, and I'm scheduling 3 days, hoping that will be enough. It will be expensive to go there, but I want my husband to get all the tests that are required. One person who went to Arizona Mayo said they talked him into taking extra tests which ended up costing significantly more. I was quoted an initial cost of $5000 (all this will be out-of-pocket, Kaiser not granting a second opinion, and we're not on Medicare yet). I hope this will not be exceeded. I would appreciate anyone's experience with this.