(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.
@windy935, I am in the same boat. My lung function has steadily declined year after year. My graph looks like a totally deflated sail ona sailboat. I live at sealevel in S.C. but presently am visiting Tucson, Az. The altitude is def affecting me. I am extremely short winded and cannot walk very far. Maybe 20 ft then I am huffing and puffing.
@windwalker oh boy! You should come back home! I would think the dry air in Arizona would have been good for you. Nicole
@nick52, So far, my trip has sucked royally. I developed mouth pain two days before departure, (I should have stayed home, thought it would pass), then, by the time I reached Oklahoma, the pain was so unbearable that I went to a dentist. He said he could not figure out which tooth it was so he sent me to an endodontist. That dr said I had a disolving tooth under a crown and that it needed to come out; but I'd need an oral surgeon. So, I get to Tucson and see a friend's dentist who took the word of tje endodontist and yanked out my molar, crown and all! Then he says, it vould be TMJ. That was last Thursday. My mouth still hurts as badly as it did before the tooth was pulled. So, now I think it was pulled for nothing and it was TMJ all along. I have been getting by on hydrocodone and 600 mg ibuprophen. I have not enjoyed a single day of my vacation. Am sending my husband along alone for the next week. I am not able to continue our trip. The combined issues of mouth and breathing....I just want to go home!
@windy935 , I often wonder about how much age has a factor in my slowing down. I know that I am below the average for my age group.
I am sooo sorry about your mouth. As someone who endured years of teeth issues and now have a mouthful of pricey and problematic implants, I can only imagine how miserable you are feeling! Sending you prayers and positive thoughts!
@windwalker ohhhhhhhhnooooooo unbelievable. Welcome to the TMJ club. I have a good oral surgeon but he live in Portland Maine. I had a major problem in 1985 and 1986. You should have come to Largo Florida to visit me instead lol! I would like to share with you my TMJ experience ( a real night mare lol to find a competent surgeon) if you are interested. Give me a call! Try to do long session of relaxation in the mean time you get home. You can try ice (if it doesn’t help try the heating pad with humidity on your TMJ. 15 min at a time every 2h. Make sure you do relaxation also! With all my love and prayers. Stay positive do not put doubts in your mind only good vibes!
Oh no @windwalker, tooth pain is horrible, I hope you feel better soon.. When I was on holiday I was eating a pizza and bit full force on back teeth, on a olive stone, I froze bottles of water and held them on my face which helped alot. Ended up needing a crown but the ice helped while away.
@windwalker, Terri, I'm so sorry about your mouth. And to be on vacation and it all happen then. I hope you heal quickly. Nan
So I was just thinking if you don’t get relief soon you might want to go back to whoever pulled the tooth and have him/her pack it with medicine in case you are dealing with a dry socket! ( hope that is not the case though)
@windwalker Gosh, Terri. What's happened to you is so horrible. It's so unfair this had to happen when you are on vacation. Can't believe they just pulled your tooth without getting a proper diagnosis. Hope you can find a good doctor to treat the problem with your mouth. With what's going on with your lungs, you don't need the added pain and suffering.