Connect
(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 ..
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!
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
Pls listen to Dr Daley’s https://www.nationaljewish.org/ntmvideos2016
-
Like -
Helpful -
Hug
2 ReactionsThanks for your response. Was your loss of voice for a prolonged period of time? I am already having lots of voice problems due to damage to my esophagus from radiation treatments. I have had speech therapy and my voice still comes and goes. So you can see why I am hesitant about the side effect of the Arkarice. Are you still negative for the MAC? Thanks for the help....Sandy
Judyhodgern. This was so very informative. Thank you
-
Like -
Helpful -
Hug
1 ReactionHi @sandykayhud The voice problem was bad for a week(I had no voice for 3 days so took a break) then started getting better, it was always there a bit but not a problem most the time. Take care
-
Like -
Helpful -
Hug
1 ReactionHi friends, here's some good news: This month (June 2019) the Gates Foundation licensed a lot of further clinical testing of SPR720 for TB. http://www.tbonline.info/posts/2019/6/23/spero-therapeutics-announces-collaboration-bill-me.
SPR720 has also had demonstrated research success (in vitro and in vivo) with NTMs . It's been shown to be safe as well as clinically effective against MAC/MAI and Abscessus. https://sperotherapeutics.com/pipeline/spr720-non-tuberculosis-mycobacterium/.
So we might finally see some new drug action a lot faster than we would have if left to Big Pharma alone!
Hugs to all and all the best
Annie
-
Like -
Helpful -
Hug
4 ReactionsThanks for that info @anniepie, love knowing that people are working on a cure for us. Lets hope SPR720 is successful in becoming a medication approved.
-
Like -
Helpful -
Hug
1 Reaction@anniepie
This SPR720 is something to keep our eye out for.
It is a drug that you would take in combo with others right? I will look for more articles on it.
Thanks!
Shari
-
Like -
Helpful -
Hug
1 Reaction@pfists ….I think it is awesome that there is something like SPR720 on horizon....but believe from comments in link that Europe will get to try first....so those folks out of USA will have to keep us posted...tdrell
-
Like -
Helpful -
Hug
2 Reactions@anniepie Thank you!
-
Like -
Helpful -
Hug
1 Reaction@sandykayhud I started Arikayce in April. After the first week I started having hoarseness. After my second week, I had a follow up appointment with my pulmonologist and he told me to stop it for a week due to severe hoarseness. My voice got better and I resumed the treatment. I had to do the albuterol inhalation before the Arikayce, gargle with warm water after each treatment and I also drank warm water after. A week after I resumed the treatment, I started having hoarseness again. I had an appointment with the ID doctor last Wednesday and he stopped the Arikayce. He replaced it with another oral antibiotics called Linezolid 600 mg once a day. So I’m now taking the big 3 plus the Linezolid. He ordered CT scan in 3 months. I will take this Linezolid for 6 months and if the MAC doesn’t get better, he may replace it with this “stronger” medication but he will get the approval from the CDC. He said it’s very hard to get this medication, they have to submit a lot of paperwork. I don’t remember the name of the medication. I will see the pulmonologist this July, he may know what medicine the ID doctor is referring to.
-
Like -
Helpful -
Hug
1 Reaction