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
I’m on arilkayce myself most of us on it lose their voice most likely the first week or so just know it will come back but gargle with warm water and salt after each use that helps and lozenges also help as well I e been on Arikayce for 3 months now
-
Like -
Helpful -
Hug
2 ReactionsThanks Heather @heathert, Yes I'm working up to it, when I've got the alarm.
Hugs from Annie
-
Like -
Helpful -
Hug
1 ReactionHello All, I purchased a LifeStraw liter water bottle and drink my RO water through that. I will leave the link below. Also, make sure you check the "Spring Water" to make sure that it is not just purified tap water. Sometimes it is. I do boil my drinking water at a rolling boil for one minute then let it cool and place it in a dispenser. That is also what I put into my LifeStraw bottle. For those who may be interested: https://www.amazon.com/gp/product/B089QVY8B4/ref=ppx_yo_dt_b_asin_title_o02_s00
Em 2014, após uma biopse com lavado brônquico, fui diagnosticada com MAI/MAC e tomei Rifampicina, Azitromicina e Etambutol, por quase 3 anos. A bactéria recidivou, passei a Claritromicina, Etambutol e Rifampicina, por mais 2 anos, melhorei, Agora recidivou novamente azitromicina, Etambutol, Rifampicina e amicacina (EV 3 x na semana). Vamos ver no que dá. Qual é o profissional que verdadeiramente conhece este assunto? Alguem aqui no grupo já se curou? e com o quê?
Oi @saaa
Um pneumologista que trata micobactérias não tuberculosas saberá mais sobre o MAC / MAI.
Parece que cerca de metade de todas as pessoas com MAC / MAI podem ter uma recaída algum tempo depois de se recuperar.
Boa sorte - desculpe, minha tradução em Português é do Google, Annie @anniepie
-
Like -
Helpful -
Hug
1 ReactionObrigada, pelo seu comentário. Muito ao contrário, a tradução está perfeita e foi muito bem recebida e com gratidão.
-
Like -
Helpful -
Hug
1 ReactionSaberia me indicar profissional muito experiente? Já estou nesta caminhad há tanto tempo e tenho piorado muito. Não tenho mais muito tempo a perder. Preciso achar alguem que conheça bem, pode até ser um pesquisador, analiso a submissão a alguma pesquisa com alguma droga nova. Obrigada!
I also use Life Straw when I am out. However, at home I use distilled water that I it from grocery store. I worry about the minerals or other elements I might be missing. Boiling up all the water I need is problematic when I can buy so cheaply. Do others use distilled water to drink or am I overboard? Hi
I also used distilled water for almost everything. I do make my coffee with spring water. I have no reason why.
Olá @saaa, gostaria de dar as minhas boas-vindas. Também estou usando o Google Translate para escrever para você em português.
Se você está procurando profissionais médicos especializados que pesquisam e tratam MAI / MAC, você pode considerar o National Jewish Health ou a Mayo Clinic. Aqui estão mais informações em português sobre a Mayo Clinic e como marcar uma consulta https://www.mayoclinic.org/portugues
Hi @saaa, I would like to add my welcome. I am also using Google translate to write to you in Portuguese.
If you are looking to expert medical professionals who research and treat MAI/MAC, you may wish to consider National Jewish Health or Mayo Clinic. Here is more information in Portuguese about Mayo Clinic and getting an appointment https://www.mayoclinic.org/portugues
-
Like -
Helpful -
Hug
1 Reaction