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
Hi. I don't know how my Tobramycin got authorized, but I am grateful that
it was. I had a pseudomonas infection and that is when I got put on the toby.
Mysteriously, the toby cleared up issues I had been suffering from for 15 yrs! I
believe it also kills off the MAC too, but do not know that as a fact. All I
know is, I do not cough any longer and breathe clearly.
-
Like -
Helpful -
Hug
1 Reaction@mac47 Oops!
@mac47, Lynne .. I have a sad tale to tell! On Friday I had a minor fender bender .. someone backed into me .. no injuries. I KNEW our "Miracle Agent" had JUST sold her insurance agency and retired .. so I called my husband and asked him who ELSE I should call within that agency that would know us. He said to ask for Judy. I did so .. GUESS WHAT?! I was told "I'm sorry .. Judy just retired yesterday!" I couldn't believe it! THIS is what happen as you age! Everyone else ages right along with you! As luck would have it .. the Agency called the "Miracle Agent" .. JoAnn .. she called me and as long time customers and practically friends .. she is going to take care of it! Truthfully for the next few years we will probably continue to call JoAnn just as old friends and continue to ask advice on ALL our different insurance policies .. because she was Independent and could represent MANY different insurance companies in all areas .. homeowners . medical .. auto etc. Very smart and VERY knowledgeable! Loved working with a woman also!
So SORRY Lynne .. I just wish I could give you advice OTHER than .. DO research and find an INDEPENDENT AGENT who represents MANY insurance companies .. THAT is the best thing .. that way they are NOT wedded to ONE company and will do what is BEST for YOU .. NOT that ONE company! Hope that helps a little! Hugs! Katherine
-
Like -
Helpful -
Hug
1 Reaction@katemn @hopeful33250 HE CALLED! I sent another message on the portal and about an hour later he called. I got my questions answered for the most part, thankfully.
Teresa, I have been looking for a new PCP. I think I will go to Nashua, about 20 - 25 miles south of here. One of the hospitals has some type of affiliation with MGH. My husband has been looking for a new PCP for months. Initially he called my doctor but whomever he spoke to said the doctor was not taking new patients, which we knew, but thought he might since I was his patient. He found one doctor whom he liked the sound of and she was out on some kind of leave so they were not making appointments for her. Then he found another and he had an appointment but days before the appointment they called him and said she was leaving the practice. So frustrating.
The other thing is that I actually like my doctor, he is very personable both in person and on the phone but due to things that have happened I have lost confidence in him. One of questions I had was should I go for a new blood test to see if the reduction in my levothyroxine has had any negative effects on my TSH. I am sure he had not planned on that but when I brought it up he put in a lab order. I thought he was so good and so caring for the first year and a half but something changed for sure. It's hard to leave and find someone new.
I have asked many people but none of the ones that these people appeal to me.
JK
-
Like -
Helpful -
Hug
2 Reactions@windwalker Terri ,, MANY countries .. if you google it you can find them .. but only some have the 75mg time release! Hugs! Katherine
@ling123, Ling, thank you for that Q&A link .. I had not seen that before .. interesting! Hugs! Katherine
-
Like -
Helpful -
Hug
1 Reaction@contentandwell Hi JK: I always admire the way you adjust your thinking and attitude to fit the situation. Thanks for sharing on Connect! Teresa
-
Like -
Helpful -
Hug
1 Reaction@contentandwell Glad to know you finally got a response!! Persistence does pay off. Teresa
-
Like -
Helpful -
Hug
1 Reaction@hopeful33250 Thanks Teresa. I have definitely mellowed with age. Many people tend to think that as a person ages they become less tolerant but I feel the opposite is true, at least for me.
When you think of it, what is there to do except adjust or find an alternative. There are some things I will just not tolerate and make my blood boil but I will not get off on that here.
JK
-
Like -
Helpful -
Hug
2 Reactions@contentandwell Yes, the "mellowing with age thing" is part of my experience as well. It seems to be a simpler way of life and much less stressful. Alternatives are a great way to adjust to the natural changes that come about with aging. I also try to avoid the "things that make my blood boil" - that's another stressor that I don't need. Teresa
-
Like -
Helpful -
Hug
2 Reactions