(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!
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 ..
– 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.
@america Hi Rita. Keep me posted…..feel better!
@america and @hydrang3a Heather has used throat lozenges called Strepfen and said they worked for her. They consist of concentrated honey and lemon. I used to eat spoons of honey when my throat hurt. Honey thick and soothing, and it is also a natural antibacterial.
Hi guys! I went to the urgent care and I did a streptococcus test and it came back negative. But I have inflammation in my throat and it’s coming from drainage. I just got word from Mayo and I will need to stop my Tobramycin 🙁 I am not a happy camper but he knows best. I will keep you all posted and thanks for all the help.
@terrim thank you for your reply. I ordered Strepfen from New Zealand. Not made or sold in USA. Also my side effects go beyond sore throat. My upper airways are irritated & inflamed. I’ve been on daily Arikayce for two weeks. Doctors know so little about this drug since it was only marketed in October. I’m relying on info provided by Heather and others who were part of the trial. At this point they are way more informative than any doctor Ive encountered. They simply haven’t had any patients on Arikace before.
@hydrang3a Glad to hear you have ordered the Strepfen, I hope you got a few boxes. Have you lost your voice yet?
@windwalker yes and they also have a kind of neurofen that goes straight to the throat topically as u suck it.
@hydrang3a No I diddnt have those other side effects. I diddnt use anything before taking the Arikace just had a glass of water handy if I coughed. I hope things get better for you soon. Not many doctors know much about this, I had a wonderful dr who had now gone back to the UK unfortunatly. Take care
I tried the big 3. I did well on the azithromycin. I had vision problems on one drug. I got a bad gastrointestinal infection from the other. So my pulmonologist decided to send me to UCLA for alternative treatment. The MAC is spreading pretty fast now.
@hydrang3e I also ordered from N. Zealand. Took a while.Then I was home to sign for the delivery…wound up having to make trips to two different post offices, no luck and then the postman arrive again at my door and I was home. Pain in neck (being polite
however, the cough drops work. Amazon has a brand called Strephils….not as effective. I know now to order several boxes at a time to save on postage and time. Flib
@flib I am so pleased they are working for you.