(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!
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Can you do goats' milk? It kept my daughter alive through her last pregnancy & beginning of nursing - we buy it powdered and canned (Meyenberg - online - for a long time Thrive had the lowest price, but check around) because fresh isn't always so fresh & tastes "off". Now it's helping my grandson thrive as Mom had to wean due to a new pregnancy - we're slowly introducing cows' milk, but he gets diarrhea, bloat & serious hiccups beyond 6 oz/day of cows' milk. We make everything from it including puddings, ice cream, smoothies, sauces... Hmm.. maybe I'll try adding the powder to my smoothies, because I also tolerate limited dairy - mostly yogurt and aged cheeses.
I'll be trying the avocado. Already eating as much yogurt as my body allows and a good probiotic. Peanut butter is in the try again later category. We are from Minnesota, and eat lots of wild rice - quite nutrient dense. We eat it like hot cereal for breakfast, in every form imaginable for dinner (including red beans and rice) and even pop it like popcorn sometimes. Having it today with veggies for supper.
I've lived with this my entire life, as has one cousin - we see it as the flip side of the weight issue, and both have siblings the battle too much weight - they are more sympathetic than most as they see how we struggle to eat "enough". I have a friend who lives with this post-cancer, and we plan to team up next time we're together to create some more smoothies we can both handle
@sueinmn Hello...a plant protein powder that is pretty palatable is Garden of Life~Vanilla Raw Protein (from 13 raw organic sprouts) It is great as a smoothie with a little banana and coconut milk if you can tolerate that. It is Vegan, gluten free, dairy free, soy free and organic.
I think the peanut butter may be causing indigestion as it is a legume and sometimes hard to digest...can you handle seeds? Sesame butter (tahini) is pretty tasty.
Kate
@america Yes, the sodium chloride is harsh at first, but you get used to it after awhile. Don't force the whole vial at one sitting. Do only what you can tolerate. Better yet, maybe put it off until you are seen at Mayo. I am not sure if it is good for you since you have only one vocal chord. Just a suggestion; maybe try a spoonful of honey to soothe your throat.
@sueinmn Hello Sue. Like many other members, I too lost a lot of weight. It fell off at a rapid rate. It was very scary. I went from 143 down to 116. Once the infection was beaten down by antibiotics; the weight and appetite came back. I now have to watch how much I put back on. I am 5'-4" and now weight 130 lbs. That is the ideal weight I want to keep it at. For now, just try to pack in calories. I have a feeling that once your infection is in check; your weight will come back too.
@flib Wow, you ARE skinny. I'm also 5'7" and I'm 30 lbs heavier than you. I know that weight loss is one of the symptoms of MAC. But I have not lost any weight since I was diagnosed a few years back. The only symptom I had was coughing up blood in the beginning. It doesn't seem that everybody who has MAC coughs up blood. I guess weight loss is the same way. Not everybody has it. But it seems quite a few in this group do.
Hi Terri, Thanks! I think I’ll wait until I go to Mayo Clinic.
Yeah, skinny is the word. I've always been thin but skinny is not good. I'm going back to smoothies. I gave them up because they disagreed with my stomach but I'll try the Garden of Eden Raw Protein. Thanks for your comment.
Eggs in smoothies, I don't know. They would likely be raw, no? I'm going to try Garden of Life Raw Protein that Sue suggests. I'll post about it once I find it and down it. I like bananas or blueberries with avocado.