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(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!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Teresamis...Canadas medical system sounds awesome! Welcome to the group tdrell
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1 ReactionDear All and @tdrell, Terri, just a heads up. My breast Clinic has available what is called 3D Mammograms .. state of the art (Digital breast tomosynthesis (tomo), also known as 3D mammography, is a revolutionary new screening and diagnostic breast imaging tool to improve the early detection of breast cancer. During the 3D part of the exam, an x-ray arm sweeps over the breast, taking multiple images in seconds.)
I called and made SURE my Clinic had this new equipment since I have "dense" breasts. I did my usual "due diligence" in checking .. have no interest in breast cancer since there is so much of it in my family .. PLUS my daughter in law was just diagnosed at age 50 with ZERO history of it in her family history! Hugs! Katherine
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1 Reaction@tdrell, Terri don't have a clue .. just get statements that say zero due from us .. so was surprised and sad to see all the problems others have had. .. OR could it be that the Tobramycin is not JUST for the Pseudomonas but for all 3 bacteria that I was diagnosed with?? Just don't know. Hugs! Katherine
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2 ReactionsHi Jen, I was seen at Mayo with good insurance. They kept sending me a statement that my insurance still owed $2,000.00 for my care (this was after I paid my portion). I called insurance company and they said they always had problems with Mayo billing. After two years Mayo sent me a check for I believe at least $1500.00 they said I had overpaid. Go figure. Good luck.Linda
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@tdrell, that is unbelievable. I would imagine that would be grounds for a lawsuit if things had not been discovered. I have things that people have told me I could sue for but I am really not the litigious type.
A woman on my street had a suspicious mammogram when she was in her 30s. Her doctor told her she was too young to worry about cancer. Her friends all told her to get another opinion. She did and she did have breast cancer. Thankfully she came through it fine, that was probably around 20 years ago.
JK
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2 Reactions@contentandwell .. JK, I am with you .. I had a terrible auto accident in 1989 .. made the decision that what limited energy .. mental and physical I had left I needed to focus on healing and making a living. I chose NOT to tie up years of my life with litigation with all it's negative energy that would seep the little mental and physical energy that I still had. In my opinion money/a settlement would have NOT have been a sufficient reward for my loss of serenity and ability to heal physically and mentally. Personally I have NEVER regretted that decision despite other's opinion I was foolish. Hugs to all! Katherine
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2 Reactions@katem8 Kate, I am in complete accord with you. Most of the time it's just not worth it. There are times when it may be, particularly when something resulted in a permanent problem or death. I have known a couple of cases when that was true but in neither case did the family choose to do anything.
JK
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1 Reaction@jentaylor, I never pay anything for at least 6 months. I would call mayo have paper in hand and write down everything. You will be ready to call your insurace company. Often its a medical codeing issue or the wrong insurance was billed first and denies payment until the other one pays first. You would think haveing 2 insurance companies would be great. But it seems they always bill in the wrong order no matter what you tell them. So don't fret too much. They will eventually figure it out. Take care of you!
Becky
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1 ReactionKatemn....sadly i fear the staff at insurance companies get bonuses for denial of claims....have you ever watched Michael Moores documentary "Sicko?" really proves the point! Tdrell
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2 ReactionsKatemn...thanks for heads up...have gotten 3D here in Mikwaukee for past 3 years.....the other thing we should always ask is that the Drs who read the mammograms are certified in reading mammograms.tdrell
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